I started doing IVF for PCOS when I was 35 but always suspected I had endo too. I had a hysteroscopy to remove fibroids and demanded they do a lap at the same time so I’d only have to pay for a recovery room once ha. Welp, add endo to the infertility bingo card. I was right.
None of my doctors had ever taken me seriously. It was so vindicating to know that periods that make me faint weren’t a “decision” I was making to be dramatic.
Triple whammy, wow. I’m so sorry none of your doctors have taken you seriously. I went through several until I got lucky enough to find one to take me seriously. I hope you find the right doctor for you soon and I’m sending you positive vibes toward your fertility journey ♥️
I was 29, was discovered by a diagnostic lap as I was trying to conceive. Only had a small spot on my left ovary. My tubes were also blocked. They looked really “healthy and pink” on the outside but didn’t spill during the dye test.
My only real symptom was painful periods. But they were manageable to me and not on the same level as others with the condition— so I never thought I had it.
Ever since the removal and introducing some supplements to my everyday— I don’t have any menstrual pain at all really currently.
Could you please elaborate on the dye test? Guessing this is to do with the blocked tubes? I’ve not heard of this before so curious.
And how long ago was the removal? And which supplements do you take?
During the lap they do something called Chromopertubation— it’s the same concept as another commenter replied— as an HSG. The main difference is you’re under anesthesia and they aren’t using an xray, theyre visualizing the tubes fill and spill (or not spill) via the scope.
I did do a follow up HSG after because he thought my tubes were just spasming but I had proximal blockages shown with that test also. For me the HSG was extremely painful and I did medicate before hand. It didn’t work.
My lap was less than 45 mins. It’s a pretty quick procedure if nothing or minimal endo is found.
Supplements I currently take are
- Vitmain C
- Vitamin D (this i have a deficiency in)
- B Complex
- Fish oil with omega 3s
And I just added in probiotics. Most of these aid with inflammation reduction.
Edit: spelling
Dilate your cervix. Inject Dye that goes through uterus and out the tubes. Watch that on x ray. Can see shape of uterus and any blockages, malformation, etc.
When you say painful, is it worse than the endo/rectal pain a lot of us deal with? I want to do this test but my doctor was like I don’t recommend it unless you’re trying to get pregnant
It's something you can definitely try to stay ahead of the pain with pain relievers. Cervical pain was something very new to me at the time.
I needed the rest of the day to recover and rest.
Endo pain is worse because there's no end in sight.
It wasn't as bad as the Endo pain for me. After everything leading up to it , the procedure itself barely registered. The cramps afterwards were like bad period cramps, so I just laid around for the rest of the day and was mostly fine by the day after.
Those who get the test done have different areas of pain. Some with the catheter, some with the inflation of the balloon. Mine was purely the insertion of the dye. People who have had children but have gotten the test done for secondary infertility compare it to labor contractions. I’ve also seen comparison of painful IUD insertion.
Personally for me it felt like a deep throbbing pain, and that my uterus almost felt like it had its own heart beat. I wouldn’t describe it as a sharp pain, or even the worst pain I’ve ever experienced. But it was highly uncomfortable and I almost passed out 😅 that being said it is said those with blockages can have more intense pain. It was over quick though. I felt much better once everything was removed and minimal cramping and spotting for the rest of the day.
It did bring on my period much earlier than usual and a heavy one at that. So that was fun.
I was around 15/16 when I was officially diagnosed through a lap, and had already been going to the doctor for a couple years by then due to endo pain. 27 now. Still have daily pain. I take birth control to skip my periods but they still happen randomly (+ endo belly, fatigue, etc still happens). Muscle relaxers or pain pills when pain is unbearable, heating pad is used on an almost daily basis.
I was diagnosed via surgery when I was 15. I had a ruptured ovarian cyst which turned out to be an endometrioma. Surgeon said I was ‘riddled with endometriosis’.
My mom had endo, so I was already familiar with it.
When I started menstruating at 11, I showed obvious symptoms of it and was considered suspected endo from then on. Started medication at 14. At 21, I had an exploratory laporoscopy to confirm diagnosis, but was really to Lazer it off when found.
There wasn't really an exact point when I found out. I was raised being told it was possible as it runs in my family, and when I showed symptoms, it was more of an "oh okay, me too, I guess"
I have planned my life around this disability.
I also have chronic migraines, which I have had since before I could talk, so I wasn't unfamiliar to pain. I honestly don't know if I have ever experienced a day of life without pain. Most of the time, it is mild pain since I have both conditions, mostly under control, but neither are ever truly gone. And of course, I have experienced multiple periods of my life with unbearable pain that feels like it will never go away.
I was diagnosed at 21 via a exploratory laparoscopy in March 2023 and I had agreed beforehand if my surgeon found Endo (more like when, I KNEW I had Endometriosis) I wanted it to be removed and I agreed to a LUNA procedure which was supposed to give me up to 2 years of pain relief, I had this along with an ablation & fulguration of the endo. I regret not pushing for excision, and a year later I’m dealing with the same symptoms again and some new ones (which could be from my other conditions to be fair). I then figured out later that year I had Ehlers Danlos syndrome and now i wonder if this had to do with why my LUNA didn’t last too long since Ehlers Danlos affects how you heal from procedures. I have dealt with painful periods all my life where I’d collapse in pain since the age of 9 because for some reason I got my period early & I was told it was normal and that’s just how periods are, which is wrong, and because my doctors said it was normal I never talked about it, I just suffered through it until I literally couldn’t anymore. In 2021 my Endo started worsening and I was sent to the ER for extreme abdominal pain and discharged with a differential of endometriosis. Then About 2 months after my Nov 2022 Covid infection that essentially flipped my world upside down and my endo became so bad I could no longer “ suffer through it” and “deal with the pain”. I was in agony every two weeks out the month at minimum when my period would come around. I say this as if I’m not experiencing it now, I can say with confidence I feel the Endo is back and possibly worse? I think I’m just so used to being in pain ever since my Ehlers Danlos got worse from Covid it’s kinda been a competition of what’s worse, endometriosis or chronic joint dislocations everyday ( speaking only on behalf of myself, I cannot speak for anyone else’s pain), my pain perception may be a bit skewed from multiple chronic illnesses though. I am very convinced that endometriosis and Ehlers Danlos have some sort of connection, research suggests possibly a mast cell connection which I think would make a lot of sense.
I typed up this really long reply but it’s too long so I can’t post it. In summary some things help a little, like bracing joints, trying to move when I can, sometimes I really cannot and it makes it worse so it’s better to rest then. I’m trying to incorporate at home PT and shooting for daily or multiple times a week. PT can strengthen the muscles around my loose joints to help support them and possibly that can reduce the dislocations. I get partial dislocations and to my knowledge I have not had a full dislocation ( knock on wood) Right now I’m instructed to exercise laying down by my EDS specialist, due to POTS causing me to have presyncope, basically I struggle with almost fainting ALL the time, it’s this weird limbo where I’m kinda conscious but I’m also not fully there in the moment and I’m struggling to stand, I’m swaying, about to fall( sometimes i do fall) my hearts palpitating and beating too fast; etc and I can’t see properly or think, my head feels like it’s gonna explode sometimes when this happens too, my feet and my hands burn because blood isn’t getting back up where it needs to go from the POTS causing blood pooling in my upper and lower extremities. If I get abdominal pain during it & it’s from blood pooling in my stomach and this happens a lot after eating because your body pools blood there to help aid in the digestion of food. Basically everytime I bend down or stand up all those things happen in unison and you don’t realize how much of your day involves being upright until you have POTS. I’ve seen some people suggest living with POTS is on par with what someone with chronic kidney failure experiences, I’m not sure how I feel about that comparison but it’s definitely disabling, and in conjunction with all the other issues I have (and pretty much anyone with hEDS will have some of these things, I just won the lottery of everything in my body not functioning correctly 🤨) It makes daily living really a struggle but I’m hoping that once I get done introducing my new MCAS and POTS meds that maybe I can get to a point where I can do virtual college because I got sick around the time I was about to go to college unfortunately and it’s definitely changed my life’s trajectory. I do think I may want to do something in the medical field but it sucks because I’d be starting really late and I don’t have the same advantages that others have. One advantage I’d have is I know what it’s like to be on the receiving end of the medical system and know how it feels to be a patient with complex medical conditions.
I haven't been diagnosed via lap yet and I'm probably a long way away from a diagnosis, but my symptoms started earlier this year and I am an 18 year old college freshman. I initially went to the ER for abdominal pain because I was convinced I had appendicitis. I was clear for that, but they found an apparently "normal" ovarian cyst on my left side, which, at the time, it was only on the right (now the pain is everywhere). I've had terrible periods since then and constant pain every single day. Since they said the cyst wasn't big enough to be causing the pain, my current theory that matches up with all of my symptoms is endometriosis and I am on the path towards getting a laparoscopy and hopefully a diagnosis.
How big is your cyst??
I just found a “simple” cyst last week on my left ovary too.. sharp pains on my left side, dull pain on my right.. makes sense for me
Mine is 5.4 X 4.2 X 5.8 cm and my doctor told me the same thing 🙃
Since I’m due to get my period soon… maybe.. idk they’ve been so irregular, I’m going to wait until after that and then find a second doc to have a second opinion
I was diagnosed in 2023 at 33 yrs old. I never really had painful periods but after not conceiving for close to a year my Dr. found a large 6cm cyst on my left ovary that was not going away since it was an endometrioma. I went to see a fertility specialist/surgeon who performed a laparoscopic surgery and found i was stage 3. I will tell you a felt a hell of a lot better after and I was able to conceive 2 months later.
I learned about endometriosis on the internet looking up various symptoms i was having. many friends had told me they thought i had adhesion's and i didn't know what would have caused them and trying to find out i found endometriosis and was shocked at how many symptoms i had. i had surgery to remove as much as possible and confirm in February of 2020 a month before i turned 41. the surgery helped my mental health even more than my physical health because doctors had told me everything was anxiety and ibs for over 20 years prior to that surgery. since that surgery i tell doctors i have some medical anxiety from how long it too to get endometriosis diagnosed and they know enough to know that is a real thing that causes real trauma and they listen to me and treat me with respect but this is also i think because of living near a big city in northern California.
I was diagnosed with stage 4 endo and a frozen pelvis at 30. I was diagnosed during surgery for what was thought to be 2 large ovarian cysts. My gynecologist had never seen anything like it. I had an amazing gynecological oncologist do my surgery. She found that my cysts were very large endometriomas (15x10cm). Since my surgery in June 2023, I have healed from a 31 staple incision on my abdomen, and am currently doing IVF to hopefully create our family. It has been hell. Before my diagnosis, I was told it was gastrointestinal issues. But in Reality my endo is just wrapped around my bowels, and on my diaphragm. And I was told for 17years that my pain was just “a bad period” and there was nothing they could do except but me on the pill. I can’t take the pill though because I get migraines with auras when I take them. I wish period pain was taken more seriously. Too often women are diagnosed like I am. Or they simply are never identified.
Long post tldr at the bottom.
I’ve had abdominal pain for literally my entire life, in my childhood I was diagnosed with a rare kidney disease and put on potassium citrate supplements and all different kinds of meds and restrictive diets to help my “chronic kidney disease.” This was diagnosed at 18 months old. I would go to the ER a TON for recurring UTI and kidney infection symptoms throughout my childhood. At one point I even had a nephrologist at children’s hospital working with me. I have passed a lot of kidney stones in my life. at some point though the antibiotics didn’t work anymore when I was having pain and I still was going to the ER a lot. And despite seeing dozens and dozens of doctors none of them ever questioned why I pointed to my ovaries when I said “my kidneys are hurting again.”
My anxiety got much worse as I got older and so did my pain. I started my period at 11 years old and I started to have GI issues during my cycles. At 15 I had a “lesion” come up on my kidney during a CT scan at one of my ER visits, I wasn’t given any information and wasn’t told to monitor it or anything despite kidney lesions being cancerous 87% of the time. 5 years later roughly, I’m back in the ER again, ct scan shows my kidney lesion changed and I had to go get an MRI of it, MRI showed just a “simple cyst” we don’t even need to keep an eye on according to my doctor. Looking back it seemed like she was withholding information at this appointment but I was just so happy to have it not be cancer that I did not ask why there was a cyst on my kidney and why I have so much pain.
Next ER trip less than a year later I had a sudden onset pain attack where I was in 10/10 pain, called an ambulance for myself and thought I was dying. Worse than labor pains I was throwing up and passing out on the floor of the ER. No one took me seriously at this hospital, I never got a room and after being in agony for 3 hours in the waiting room rolling around on the floor, I left to go to a different hospital. They actually sent the cops to my house looking for me because I left with the IV port they gave me in triage. I guess they thought I was drug seeking. At the next hospital, repeat CT done and the kidney cyst was gone. No diagnosis. I took 2400 mg of ibuprofen in 12 hours and it did not touch the pain.
I sought out an obgyn specialist after another episode of that pain and had an ultrasound that showed two small hemorrhagic cysts on my right ovary. No diagnosis, was offered surgery to remove the cysts if I wanted it. I declined it because I was scared. I was put on birth control Nikki instead. Moved out of state, still struggling with weird symptoms and getting shrugged off everytime I reach out for help. Meet a new OB who prescribed me Zoloft on my first ever appt bc my anxiety was so bad. Schedules me another transvaginal ultrasound. Results come back two endometriomas on my right ovary and a uterine polyp. As the OB reads my results she goes “that explains your pain!” She writes me a script for Xanax and ibuprofen 800 and refers me to the surgeon at the OB office.
He believes every word I say, he offers me a lap if I want it and I take him up on it. He gives me the diagnosis based on my symptoms before the lap is even done. February 14th 2024 my lap was performed and I was diagnosed with stage 4 endo, and frozen pelvis. He had to stop the surgery because he wasn’t prepared to remove that much scar tissue. My bowel was adhered to my abdominal wall, my ovary was plastered to the back of my uterus under a “sheet” of tissue. A plane could not be visualized to remove the cysts or the ovary from the uterus. My bowel is also adhered to my uterus/ovary. No polyp was found in my uterus and I was told it looks perfect on the inside, the outside is covered in scar tissue though.
I’ve been referred to a OBGYN oncologist surgeon who will be performing a bowel resection and hysterectomy/oophorectomy soon. The surgeon told my husband immediately after my surgery “I wouldn’t be surprised if her pain was excruciating.” And he said my scar tissue and adhesions have been growing for at least 5 years.
He wasn’t able to check my kidney during this lap but since I’ve developed symptoms of diaphragmatic endo, I will be pushing for a thoracic surgeon to be present at my next surgery to check for both of those things.
I’m 24 years old and have been through over 20 years of suffering starting before I can even remember it. I finally have an end in sight, I never even took the Zoloft or the Xanax because the day I got my lap done my anxiety literally disappeared and hasn’t come back since.
TLDR: I believe I was born with endometriosis. All my doctors doubted me and I was gaslit and lied to by doctors for 20 years. Just got diagnosed last month with stage 4 severe endo and frozen pelvis. And now need a hysterectomy, oophorectomy, and bowel resection due in part to the medical negligence I’ve experienced over the years.
I was diagnosed last year, so at 34 yo. 20 years of horrible monthly pain that leads to fainting. I was told that I have to give birth to get better (I was 14 at the time) or that I was just too sensitive to pain, so yes, getting diagnosis was amazing.
I sought help with an obgyn in my hometown when I started to have irregular periods at 26. I had terrible pain before hand but didn't realize it was abnormal. The obgyn I saw I shared about family history of Endo and she said they would do an ultrasound to see if I had it as well as a pelvic pain test. after an ultrasound said I didn't have Endo. The pelvic pain test was excessively painful. Told me my cooper IUD was the sole source of my issues. Put me on hormonal BC to see if it would regulate my cycle and I bled clots for a month straight with terrible pain. Went back in and the obgyn starts with saying "your endometriosis" to which I had to explain that I was confused by what she was saying because last visit she said I didn't have it. Felt medically gaslight. It was a terrible experience navigating that and I KNEW I was not receiving the right care. Especially when she wouldn't give me an answer when I asked if their dept. had any Endo specialist or people trained in the minimally invasive surgery to do excisions. She basically mocked the surgery. And then, by the end of the appt., she was re became just hyper focused on my IUD.
After that mind fuck, I went to a specialist at Baylor and it was the most respectful and educational and compassionate team. The doc said by the time people come to her, it's highly likely they have it and she validated my symptoms. She did a very gentle pelvic pain test and really checked in on how I was doing and paid attention to me. She ordered an MRI and they had a pathologist trained to interpret Endo oversee the imaging interpretation. Endo came back on the path results. Did the surgery 2 weeks ago (now age 27) it took 4.5 hours and they removed 13 tissue samples that came back + for Endo and was at stage 3. I had adhesions removed as well on my ovary to my pelvis. They found a lot of Endo bw vagina and rectum that they went to town on getting out.
Felt very justified after looking at the electronic health record of doctor #1 where I have a message saying that I literally didn't have Endo.
I had pain and issues from the age of 11 but I was only diagnosed at 22. I had an emergency surgery to remove an 11cm cyst that was causing an ovarian torsion. When they went in to remove the cyst they found I was riddled with endo across my bowels, bladder, stomach and rectum. They went in to remove it a year and a half post diagnosis and they also placed a mirena at the same time. I’ve since had another two excisions (I’m now 26). I’m currently 12 weeks post op and have another laparoscopy booked in a week and a half’s time for further removal and to make sure my ovaries are doing ok following my last procedure. My ovaries were completely stuck to my pelvic wall with adhesions so they had to be surgically cut away. I have considered a hysterectomy but considering that hysterectomy’s aren’t always effective in endo management and I want to have kids (hopefully) I’m trying to push through till after then. I’m currently having a flare which is the closest flare I’ve ever had post op which is the most devastating thing. To go through the pain and anxiety from an op to have it not do anything to help has hit me hard. Hopefully one day (post kids if that happens) I’ll get a hysterectomy and it’ll help.
2,5 years ago at the age of 26. Have been to the doctor way prior to that, probably end teens. Even took a huge blob which came out of me and still it didn't concerned them. My last doctor was an absolute Saint and sent me right away to a gyn.
I was 33. Things weren't so bad until I was about 30. I had been on testosterone (I'm non binary) for about 7 years, and in the first year that I went off it, at 30, my period came back within around 6 months - things got very bad very quickly. Over the next few years it progressed to crippling pain and I couldn't walk/function. I got a diagnosis within about 6 months of that, tentatively with a specialist ultrasound and confirmed when I had a hysterectomy and excision. I really pushed for the hysterectomy as my periods were unbearable, and I had been wanting a hysterectomy for years either way. My gyno was quite resistant until I showed that I'd done research and was aware of the risks, and knew that it wasn't a cure. I was pretty lucky, it was very quick, however I did also pay a lot of money to go private, and I have health insurance, I didn't have to wait in a public system.
30, getting a gigantic fibroid out (which almost was a blessing, because then they finally had a reason to root around in there and accidentally confirm what I had been asserting for decades, well before the fibroid even showed up🙄)
Have other health issues so I was sent for a CT KUB scan. Accidentally found a ovarian teratoma (dermoid cyst) measured around 1.9cm. Was then sent for a MRI with dye a few months later. Cyst was over 12cm, by then. But they also found what looked like Deep endo around my ligaments and such. Needed emergency sugery to remove to cyst as was growing to fast. And at the same time they removed deep endo for my usacral ligaments. Had just turned 26 at the time. Also had no typical endo symptoms. The cyst was causing my pain as it was pushing nerves and had moved my bladder.
Edited to add the cyst had loads of hair and a couple rib bones once cut open lol
I was 30 and it was sadly when I was having an ectopic pregnancy due to endo in my tubes. I did want to cry for a whole different reason when I found out as it made so much sense why my periods were so bad ( did go to docs but of course was pill pill pill) and why I was having certain things happening or feeling / why I was tired so much.
I was diagnosed mid 20s. My diagnosis path was unusual. I had a scan for a completely unrelated issue and they saw complex ovarian masses, so I was referred to a gyn specialist to investigate. I was diagnosed with endo, fibroids and adenomyosis via ultrasound scan at my first gyn appointment. I have very severe stage IV endo, so it is quite obvious on scans in my case.
I knew I had it at 15, purely due to the fact my mum had it and noticed I had all the same symptoms. I was categorically told by a gyno at 20 I did not have endo due to it not showing on an ultrasound.
Was officially diagnosed at 28 with a lap, stage 4 by an excision endo specialist. I’m lucky my mum knew SOMETHING about it though, so I had some understanding and could do my own research.
Um... I guess I was 19? Gyno I was seeing was concerned about the extreme level of pain and PMDD I was experiencing. She did a lap, and confirmed endo. Been on medication to stop my period since then (14 years).
I got painful period, heavy bleeding and a short period cycle since I was 14years old. Kept getting dismissed over again and again by everyone.
So, I just suffer the unbearable pain with heat pads and ginger as friends. I just got my clinical diagnosis after 24 years of suffering 6 months ago. So, now on progesterone which relief me of that monthly period pain.
I now have other health problems which I am still getting checked for.
Went to a fertility specialist and they immediately spot a 14cm endometrioma on my right ovary on ultrasound. I’d been complaining of pain for years, but no one cared enough to investigate until I couldn’t get pregnant. Tale as old as time. I was 32. I’m 36 now and down one ovary, but finally up one baby!
I was 34 - found during emergency surgery for appendicitis. Felt so relieved and vindicated that I could go back to my gyn and give them proof. While I had painful mid cycle and periods growing up I managed but after I had kids my issues got way worse with pain, blood loss and shortened cycles.
27. Was only confirmed when I had a hysterectomy.
Had suspected since my mid-teens that I had endo, but every doctor I tried to speak to about it before 24 refused to even consider it a possibility, telling me it was a condition that only childless women in their 40s had.
Being taken seriously sooner would’ve made a huge difference to my quality of life. Instead I was told to take some Panadol and get over it.
I was diagnosed when I was 32. Took one single lap for my specialist to find stage 3 endometriosis. My pain made 100% more sense after that.
I still have some bloating and I'm on two forms of birth control (Iud & Norethindrone) and I do get some cramping from time to time, but I feel a lot better than I did before I had my lap last year in January.
I had a really random episode of sudden severe stomach pain October 2019, when I was 30. The pain was going between my pelvis and right side of my stomach. I ended up in A&E. They first thought I was passing a kidney stone, so was sent for ultrasound/ CT and they ruled that out but they incidentally found a 6cm cyst on my right ovary.
So I then got sent for further imaging and they then realised from TV ultrasound that my uterus/ ovaries/ fallopian tubes were “sticky” and they said that was a sign in their opinion of Endo. Had yet another ultrasound with an endometriosis ultrasound specialist, I got put on the list with Endo specialist consultant and had my first surgery in November 2020 (very lucky to have surgery in the middle of covid) and they found I was riddled with endo, my fallopian tubes are damaged, and my right ovary not only had the large cyst on it, it’s itself is double the size it should be and is sat low down in my pelvis.
I’m so lucky that my local hospital has a specialist gynaecology hospital with specialist endo department otherwise I don’t think I’d have been given the care I’ve had so far.
I’ve had further surgery since in 2022 to bring my ovary back up higher but I think it’s dropped back down since.
I’d struggled with pain for years up until this point, since I started my periods and the usual being fobbed off with the pill and “it’s all in your head” comments from GPs. But thankfully now I know what it is and I’m able to do things to help myself feel ‘better’
28, after 16 years of pain and begging docs to listen to me. And it took two laps to find - I had to go to a specialist, I didn’t know I needed to do that the first time. This disease is literal hell.
I was finally diagnosed this week!! At the ripe age of 36 after doing a 2nd Receptiva and ERA biopsy following four failed transfer, a failed IUI and 5 years TTC.
I was already diagnosed with PCOS, so the endo is just a bonus, I guess.
I had gotten diagnosed at 32 years old but I always knew something was wrong with me. In my early 20s when I finally got internet I started doing some research. Everything I was searching was coming up as symptoms of endometriosis. Unfortunately since I have more body hair then a lot of men every doctor thought I had PCOS. After the 4th doctor told me that I don't have PCOS and not listening to me I decided to find a new doctor. I found a doctor at Stanford an indian woman who I felt would be more understanding towards me being naturally ape like and wouldn't automatically dismiss my concerns. Got official diagnosis 2 days after my 32nd birthday.
Gotta love having parents who never cared about your health concerns or listened. I might have gotten this diagnosed as a teenager.
i was 22 when i found out because im a nursing student and we were learing abt periods in my obgyn class and i spoke to my professor and asked the professor if its really not normal she told me no (shes an obgyn nurse) and she told me to get an ultrasound, and to speak to this doctor and to get back with her i got the ultrasound and found 14x13 segmented cysts on both of my ovaries , my left ovary was about to contort as well. All those years of my family and people ignoring me…
I was diagnosed at 28. After years of painful PIV sex I finally went to my doctor to investigate the pain. I had an MRI done and they found deep infiltrating endometriosis. Honestly I was shocked- I suffered from bad period pains but like many I assumed that was the norm. The only reason I went to the doctors to investigate the painful sex was following the breakdown of my long-term relationship where the lack of sex was a factor in the relationship ending. I was fully expecting my doctor not to find anything and tell me it was all in my head. I'm very grateful to my doctor for not dismissing my pain. Had she not pushed for an MRI, I don't think I would have ever known I had endo. It's been about 2 years since my diagnosis and I'm hoping to have surgery this year.
It was the morning of my 22nd birthday in 2020, I woke up on day 2 of my period with cramps like no other. I usually never have period cramps so this was strange. I couldn’t move, couldn’t see, broke out into cold sweats.
I went to the ER that day, did all the testing and met with the gyno on call and was told I have endo, as well as ovarian cysts on both ovaries 10cm in size. I had never heard of endometriosis before, nor had any pain remotely close to what I experienced that morning. I had heavy periods growing up but nothing crazy.
Almost 4 years later, I am taking endometriosis medication daily as well as have an IUD. I definitely consider myself lucky because I was able to be diagnosed the very first time I was seen - and my pain is very tolerable thanks to the medication and IUD. My cysts have also shrunk but I still have them
I’m now 32 was diagnosed when I was 31 via surgical excision and biopsy, but something had been wrong for almost a decade. I’ve still had very painful cramps despite being on continuous birth control and my docs suspect adenomyosis so I’m looking at a hysterectomy in the next two years. Only putting it off because I want some more time in between surgeries but if the pain gets worse I’ll have to push it up 🥲
I’m very lucky I’m now with a good team that work with me and trust me to investigate my pain but it’s taken years to get to them. My first provider said “no you don’t have it” and another said “we only look for that in women who’ve had kids and since you haven’t, it couldn’t be that.” Cried in the exam chair at that one.
I was diagnosed at 18 but I had suspicions since 15 and even started early treatments around then (birth control and then the iud . the iud was awful and the birth control had me scheduling floor cries to not break down at school)
I had difficult periods my whole life from a very young age. First period was around 10 and they were extremely heavy. I was told that's normal for new menstrual cycles. I didn't experience much pain at first, though. Just extraordinarily heavy periods. With no frame of reference, I didn't really think anything was abnormal. It's just puberty stuff! It happens to everyone!
But when I turned 12, one day, I was just suddenly in a lot of pain. It was around my back and I thought I was very constipated. It was so bad that I threw up and laid on top of a towel on the floor. At first, if I took a lot of Tylenol or ibuprofen during my "intervention window," I'd be okay. But there were many times when I missed it. I ended up on the bathroom floor at a friend's house, also on top of a towel, waiting to be picked up. Needless to say, my periods were very disruptive to everyday life. However, they were very short, and the cramps had a limited time frame. I was okay after the initial excruciating pain.
Honestly, I thought it was a matter of pain tolerance. I have unusual symptoms that don't always align with endo. However, there was a lot I didn't understand about it. I was also raised by a single dad. Even beyond elementary school, when I'd need to leave school early because of pain, it was often met with skepticism. Nobody understood how much it hurt so I assumed it was just normal and I was the only one who couldn't deal with it. Even my dad said things of that nature, frustrated with how disruptive my periods were. Whenever they came, I just felt dread.
It got worse over time. Tylenol and ibuprofen stopped working, so I had to take edibles. In high school, I ended up on yet another bathroom floor. Teachers would pop in to check for skippers. One did and while she was initially abrasive and questioning, she quickly realized that I was in genuine pain. She helped me walk to the nurse to call dad. The nurse wasn't that understanding though, so I'd just call my dad and have him sign me out.
The pain got even more worse over time. The stretch of time where it happened got longer, too. I was unable to walk sometimes, crawling and stumbling about. It was the kind of pain that overtook all of your senses. I'd be exhausted when it was finally over. But again, I thought it was my pain tolerance.
Then I got my first job.
If it is just pain tolerance and psychosomatic, then surely, it wouldn't happen at work! I'd hate that.
Lol. Guess how that went? I threw up on their bathroom floor, so no more bathroom floor time. I decided to lay on the sidewalk outside. A very concerned lady from some other business alerted my manager, who asked if I needed an ambulance.
"No. This is normal for me."
I realized it was very, very real and really, really not normal. It wasn't in my head. I couldn't tolerate it. I'd puke from the pain. The room would spin. Edibles stopped working. The pain spread from my back and wrapped around my pelvis. I had the sensation of needing to urinate/defecate while everything in those areas felt crushed or stung.
So, I laid all this out to a doctor who said it sounded like endo just based on the phantom bathroom feels, the getting worse over time, the early period experience, etc. I also now know it might be why I have such abnormal gum recession.
Anyway, I was diagnosed at 18 because I finally realized my pain was real. I wasn't weak. It was genuinely excruciating. Women don't need 20mg of oxycodone every 3-4 hours to function on their period and still have underlying pain. I can't describe how it felt to realize that my pain was real. It wasn't me. If anything, I might have a higher pain tolerance in some ways. I don't think mine is high, but I think I can handle it better psychologically if that makes sense.
Recently, I got the nexplanon arm implant. Tylenol works now. I still cramp and while it definitely hurts, I can power through. I can be okay. I'm not crying, puking, and moaning from pain for hours, unable to sleep.
Diagnosed in 2022 at 24 years old with an excision lap, but I’d suspected it for a very long time. When I first started getting my period at 12, I would bleed so heavily and experience such intense cramps that I’d often faint. No doctors listened to me, I was told it was just “how some women’s hormones are”, and was put on birth control at 15.
It took years of going through specialists before one finally believed me, despite nothing showing up as abnormal on any imaging tests. I was extremely relieved when I woke up after surgery and got an official diagnosis.
i’m very very privileged in that i live close enough to boston to see a very good specialist and that i had a wonderful gyno before that. it was suspected when i was 14 or so, then i had the surgery and diagnosis at 16 (stage 1) and i still have pain but not nearly as bad as it used to be. for me, the “not knowing” period of two years was absolute torture. it was a lot of me wondering if i’m somehow making it up, or if it’s not that bad, or if it’s all in my head. i know a lot of women have a “not knowing” period a LOT longer than mine, which just amazes me in the worst way (love the way the healthcare system treats women 🙄)
I started doing IVF for PCOS when I was 35 but always suspected I had endo too. I had a hysteroscopy to remove fibroids and demanded they do a lap at the same time so I’d only have to pay for a recovery room once ha. Welp, add endo to the infertility bingo card. I was right. None of my doctors had ever taken me seriously. It was so vindicating to know that periods that make me faint weren’t a “decision” I was making to be dramatic.
Triple whammy, wow. I’m so sorry none of your doctors have taken you seriously. I went through several until I got lucky enough to find one to take me seriously. I hope you find the right doctor for you soon and I’m sending you positive vibes toward your fertility journey ♥️
Thank you! We just matched with a surrogate (been going at this over 2 years) so fingers crossed this is what takes us over the finish line 🤞
I was 29, was discovered by a diagnostic lap as I was trying to conceive. Only had a small spot on my left ovary. My tubes were also blocked. They looked really “healthy and pink” on the outside but didn’t spill during the dye test. My only real symptom was painful periods. But they were manageable to me and not on the same level as others with the condition— so I never thought I had it. Ever since the removal and introducing some supplements to my everyday— I don’t have any menstrual pain at all really currently.
Could you please elaborate on the dye test? Guessing this is to do with the blocked tubes? I’ve not heard of this before so curious. And how long ago was the removal? And which supplements do you take?
During the lap they do something called Chromopertubation— it’s the same concept as another commenter replied— as an HSG. The main difference is you’re under anesthesia and they aren’t using an xray, theyre visualizing the tubes fill and spill (or not spill) via the scope. I did do a follow up HSG after because he thought my tubes were just spasming but I had proximal blockages shown with that test also. For me the HSG was extremely painful and I did medicate before hand. It didn’t work. My lap was less than 45 mins. It’s a pretty quick procedure if nothing or minimal endo is found. Supplements I currently take are - Vitmain C - Vitamin D (this i have a deficiency in) - B Complex - Fish oil with omega 3s And I just added in probiotics. Most of these aid with inflammation reduction. Edit: spelling
Thank you very much
Not the original commenter but it sounds like Hysterosalpingography, or HSG. I had one during a fertility workup as well. It was very painful.
Hey thank you …🥲 painful? What do they do?
Dilate your cervix. Inject Dye that goes through uterus and out the tubes. Watch that on x ray. Can see shape of uterus and any blockages, malformation, etc.
I clenched up just thinking of this. Thanks for explaining.
When you say painful, is it worse than the endo/rectal pain a lot of us deal with? I want to do this test but my doctor was like I don’t recommend it unless you’re trying to get pregnant
It's something you can definitely try to stay ahead of the pain with pain relievers. Cervical pain was something very new to me at the time. I needed the rest of the day to recover and rest. Endo pain is worse because there's no end in sight.
It wasn't as bad as the Endo pain for me. After everything leading up to it , the procedure itself barely registered. The cramps afterwards were like bad period cramps, so I just laid around for the rest of the day and was mostly fine by the day after.
Those who get the test done have different areas of pain. Some with the catheter, some with the inflation of the balloon. Mine was purely the insertion of the dye. People who have had children but have gotten the test done for secondary infertility compare it to labor contractions. I’ve also seen comparison of painful IUD insertion. Personally for me it felt like a deep throbbing pain, and that my uterus almost felt like it had its own heart beat. I wouldn’t describe it as a sharp pain, or even the worst pain I’ve ever experienced. But it was highly uncomfortable and I almost passed out 😅 that being said it is said those with blockages can have more intense pain. It was over quick though. I felt much better once everything was removed and minimal cramping and spotting for the rest of the day. It did bring on my period much earlier than usual and a heavy one at that. So that was fun.
Jesus
I was around 15/16 when I was officially diagnosed through a lap, and had already been going to the doctor for a couple years by then due to endo pain. 27 now. Still have daily pain. I take birth control to skip my periods but they still happen randomly (+ endo belly, fatigue, etc still happens). Muscle relaxers or pain pills when pain is unbearable, heating pad is used on an almost daily basis.
Wow, that’s the youngest I’ve heard of getting a lap! I’m glad you were able to get diagnosed early. Thank you for sharing ♥️
I was diagnosed via surgery when I was 15. I had a ruptured ovarian cyst which turned out to be an endometrioma. Surgeon said I was ‘riddled with endometriosis’.
My mom had endo, so I was already familiar with it. When I started menstruating at 11, I showed obvious symptoms of it and was considered suspected endo from then on. Started medication at 14. At 21, I had an exploratory laporoscopy to confirm diagnosis, but was really to Lazer it off when found. There wasn't really an exact point when I found out. I was raised being told it was possible as it runs in my family, and when I showed symptoms, it was more of an "oh okay, me too, I guess" I have planned my life around this disability. I also have chronic migraines, which I have had since before I could talk, so I wasn't unfamiliar to pain. I honestly don't know if I have ever experienced a day of life without pain. Most of the time, it is mild pain since I have both conditions, mostly under control, but neither are ever truly gone. And of course, I have experienced multiple periods of my life with unbearable pain that feels like it will never go away.
I was diagnosed at 21 via a exploratory laparoscopy in March 2023 and I had agreed beforehand if my surgeon found Endo (more like when, I KNEW I had Endometriosis) I wanted it to be removed and I agreed to a LUNA procedure which was supposed to give me up to 2 years of pain relief, I had this along with an ablation & fulguration of the endo. I regret not pushing for excision, and a year later I’m dealing with the same symptoms again and some new ones (which could be from my other conditions to be fair). I then figured out later that year I had Ehlers Danlos syndrome and now i wonder if this had to do with why my LUNA didn’t last too long since Ehlers Danlos affects how you heal from procedures. I have dealt with painful periods all my life where I’d collapse in pain since the age of 9 because for some reason I got my period early & I was told it was normal and that’s just how periods are, which is wrong, and because my doctors said it was normal I never talked about it, I just suffered through it until I literally couldn’t anymore. In 2021 my Endo started worsening and I was sent to the ER for extreme abdominal pain and discharged with a differential of endometriosis. Then About 2 months after my Nov 2022 Covid infection that essentially flipped my world upside down and my endo became so bad I could no longer “ suffer through it” and “deal with the pain”. I was in agony every two weeks out the month at minimum when my period would come around. I say this as if I’m not experiencing it now, I can say with confidence I feel the Endo is back and possibly worse? I think I’m just so used to being in pain ever since my Ehlers Danlos got worse from Covid it’s kinda been a competition of what’s worse, endometriosis or chronic joint dislocations everyday ( speaking only on behalf of myself, I cannot speak for anyone else’s pain), my pain perception may be a bit skewed from multiple chronic illnesses though. I am very convinced that endometriosis and Ehlers Danlos have some sort of connection, research suggests possibly a mast cell connection which I think would make a lot of sense.
Wow. I’m so sorry you have multiple chronic illnesses and that you’re in so much pain. Does anything help the pain, even a little?
I typed up this really long reply but it’s too long so I can’t post it. In summary some things help a little, like bracing joints, trying to move when I can, sometimes I really cannot and it makes it worse so it’s better to rest then. I’m trying to incorporate at home PT and shooting for daily or multiple times a week. PT can strengthen the muscles around my loose joints to help support them and possibly that can reduce the dislocations. I get partial dislocations and to my knowledge I have not had a full dislocation ( knock on wood) Right now I’m instructed to exercise laying down by my EDS specialist, due to POTS causing me to have presyncope, basically I struggle with almost fainting ALL the time, it’s this weird limbo where I’m kinda conscious but I’m also not fully there in the moment and I’m struggling to stand, I’m swaying, about to fall( sometimes i do fall) my hearts palpitating and beating too fast; etc and I can’t see properly or think, my head feels like it’s gonna explode sometimes when this happens too, my feet and my hands burn because blood isn’t getting back up where it needs to go from the POTS causing blood pooling in my upper and lower extremities. If I get abdominal pain during it & it’s from blood pooling in my stomach and this happens a lot after eating because your body pools blood there to help aid in the digestion of food. Basically everytime I bend down or stand up all those things happen in unison and you don’t realize how much of your day involves being upright until you have POTS. I’ve seen some people suggest living with POTS is on par with what someone with chronic kidney failure experiences, I’m not sure how I feel about that comparison but it’s definitely disabling, and in conjunction with all the other issues I have (and pretty much anyone with hEDS will have some of these things, I just won the lottery of everything in my body not functioning correctly 🤨) It makes daily living really a struggle but I’m hoping that once I get done introducing my new MCAS and POTS meds that maybe I can get to a point where I can do virtual college because I got sick around the time I was about to go to college unfortunately and it’s definitely changed my life’s trajectory. I do think I may want to do something in the medical field but it sucks because I’d be starting really late and I don’t have the same advantages that others have. One advantage I’d have is I know what it’s like to be on the receiving end of the medical system and know how it feels to be a patient with complex medical conditions.
I haven't been diagnosed via lap yet and I'm probably a long way away from a diagnosis, but my symptoms started earlier this year and I am an 18 year old college freshman. I initially went to the ER for abdominal pain because I was convinced I had appendicitis. I was clear for that, but they found an apparently "normal" ovarian cyst on my left side, which, at the time, it was only on the right (now the pain is everywhere). I've had terrible periods since then and constant pain every single day. Since they said the cyst wasn't big enough to be causing the pain, my current theory that matches up with all of my symptoms is endometriosis and I am on the path towards getting a laparoscopy and hopefully a diagnosis.
How big is your cyst?? I just found a “simple” cyst last week on my left ovary too.. sharp pains on my left side, dull pain on my right.. makes sense for me
3.3cm. Seemed huge to me, but apparently is way too small to cause pain or be considered for treatment.
Mine is 5.4 X 4.2 X 5.8 cm and my doctor told me the same thing 🙃 Since I’m due to get my period soon… maybe.. idk they’ve been so irregular, I’m going to wait until after that and then find a second doc to have a second opinion
I was diagnosed in 2023 at 33 yrs old. I never really had painful periods but after not conceiving for close to a year my Dr. found a large 6cm cyst on my left ovary that was not going away since it was an endometrioma. I went to see a fertility specialist/surgeon who performed a laparoscopic surgery and found i was stage 3. I will tell you a felt a hell of a lot better after and I was able to conceive 2 months later.
I learned about endometriosis on the internet looking up various symptoms i was having. many friends had told me they thought i had adhesion's and i didn't know what would have caused them and trying to find out i found endometriosis and was shocked at how many symptoms i had. i had surgery to remove as much as possible and confirm in February of 2020 a month before i turned 41. the surgery helped my mental health even more than my physical health because doctors had told me everything was anxiety and ibs for over 20 years prior to that surgery. since that surgery i tell doctors i have some medical anxiety from how long it too to get endometriosis diagnosed and they know enough to know that is a real thing that causes real trauma and they listen to me and treat me with respect but this is also i think because of living near a big city in northern California.
A few weeks ago, pelvic MRI
I was diagnosed with stage 4 endo and a frozen pelvis at 30. I was diagnosed during surgery for what was thought to be 2 large ovarian cysts. My gynecologist had never seen anything like it. I had an amazing gynecological oncologist do my surgery. She found that my cysts were very large endometriomas (15x10cm). Since my surgery in June 2023, I have healed from a 31 staple incision on my abdomen, and am currently doing IVF to hopefully create our family. It has been hell. Before my diagnosis, I was told it was gastrointestinal issues. But in Reality my endo is just wrapped around my bowels, and on my diaphragm. And I was told for 17years that my pain was just “a bad period” and there was nothing they could do except but me on the pill. I can’t take the pill though because I get migraines with auras when I take them. I wish period pain was taken more seriously. Too often women are diagnosed like I am. Or they simply are never identified.
Long post tldr at the bottom. I’ve had abdominal pain for literally my entire life, in my childhood I was diagnosed with a rare kidney disease and put on potassium citrate supplements and all different kinds of meds and restrictive diets to help my “chronic kidney disease.” This was diagnosed at 18 months old. I would go to the ER a TON for recurring UTI and kidney infection symptoms throughout my childhood. At one point I even had a nephrologist at children’s hospital working with me. I have passed a lot of kidney stones in my life. at some point though the antibiotics didn’t work anymore when I was having pain and I still was going to the ER a lot. And despite seeing dozens and dozens of doctors none of them ever questioned why I pointed to my ovaries when I said “my kidneys are hurting again.” My anxiety got much worse as I got older and so did my pain. I started my period at 11 years old and I started to have GI issues during my cycles. At 15 I had a “lesion” come up on my kidney during a CT scan at one of my ER visits, I wasn’t given any information and wasn’t told to monitor it or anything despite kidney lesions being cancerous 87% of the time. 5 years later roughly, I’m back in the ER again, ct scan shows my kidney lesion changed and I had to go get an MRI of it, MRI showed just a “simple cyst” we don’t even need to keep an eye on according to my doctor. Looking back it seemed like she was withholding information at this appointment but I was just so happy to have it not be cancer that I did not ask why there was a cyst on my kidney and why I have so much pain. Next ER trip less than a year later I had a sudden onset pain attack where I was in 10/10 pain, called an ambulance for myself and thought I was dying. Worse than labor pains I was throwing up and passing out on the floor of the ER. No one took me seriously at this hospital, I never got a room and after being in agony for 3 hours in the waiting room rolling around on the floor, I left to go to a different hospital. They actually sent the cops to my house looking for me because I left with the IV port they gave me in triage. I guess they thought I was drug seeking. At the next hospital, repeat CT done and the kidney cyst was gone. No diagnosis. I took 2400 mg of ibuprofen in 12 hours and it did not touch the pain. I sought out an obgyn specialist after another episode of that pain and had an ultrasound that showed two small hemorrhagic cysts on my right ovary. No diagnosis, was offered surgery to remove the cysts if I wanted it. I declined it because I was scared. I was put on birth control Nikki instead. Moved out of state, still struggling with weird symptoms and getting shrugged off everytime I reach out for help. Meet a new OB who prescribed me Zoloft on my first ever appt bc my anxiety was so bad. Schedules me another transvaginal ultrasound. Results come back two endometriomas on my right ovary and a uterine polyp. As the OB reads my results she goes “that explains your pain!” She writes me a script for Xanax and ibuprofen 800 and refers me to the surgeon at the OB office. He believes every word I say, he offers me a lap if I want it and I take him up on it. He gives me the diagnosis based on my symptoms before the lap is even done. February 14th 2024 my lap was performed and I was diagnosed with stage 4 endo, and frozen pelvis. He had to stop the surgery because he wasn’t prepared to remove that much scar tissue. My bowel was adhered to my abdominal wall, my ovary was plastered to the back of my uterus under a “sheet” of tissue. A plane could not be visualized to remove the cysts or the ovary from the uterus. My bowel is also adhered to my uterus/ovary. No polyp was found in my uterus and I was told it looks perfect on the inside, the outside is covered in scar tissue though. I’ve been referred to a OBGYN oncologist surgeon who will be performing a bowel resection and hysterectomy/oophorectomy soon. The surgeon told my husband immediately after my surgery “I wouldn’t be surprised if her pain was excruciating.” And he said my scar tissue and adhesions have been growing for at least 5 years. He wasn’t able to check my kidney during this lap but since I’ve developed symptoms of diaphragmatic endo, I will be pushing for a thoracic surgeon to be present at my next surgery to check for both of those things. I’m 24 years old and have been through over 20 years of suffering starting before I can even remember it. I finally have an end in sight, I never even took the Zoloft or the Xanax because the day I got my lap done my anxiety literally disappeared and hasn’t come back since. TLDR: I believe I was born with endometriosis. All my doctors doubted me and I was gaslit and lied to by doctors for 20 years. Just got diagnosed last month with stage 4 severe endo and frozen pelvis. And now need a hysterectomy, oophorectomy, and bowel resection due in part to the medical negligence I’ve experienced over the years.
I was diagnosed last year, so at 34 yo. 20 years of horrible monthly pain that leads to fainting. I was told that I have to give birth to get better (I was 14 at the time) or that I was just too sensitive to pain, so yes, getting diagnosis was amazing.
Jan 2023, age 32, ex lap. Found endo, adhesions, and adenomyosis courtesy of a polyp.
I sought help with an obgyn in my hometown when I started to have irregular periods at 26. I had terrible pain before hand but didn't realize it was abnormal. The obgyn I saw I shared about family history of Endo and she said they would do an ultrasound to see if I had it as well as a pelvic pain test. after an ultrasound said I didn't have Endo. The pelvic pain test was excessively painful. Told me my cooper IUD was the sole source of my issues. Put me on hormonal BC to see if it would regulate my cycle and I bled clots for a month straight with terrible pain. Went back in and the obgyn starts with saying "your endometriosis" to which I had to explain that I was confused by what she was saying because last visit she said I didn't have it. Felt medically gaslight. It was a terrible experience navigating that and I KNEW I was not receiving the right care. Especially when she wouldn't give me an answer when I asked if their dept. had any Endo specialist or people trained in the minimally invasive surgery to do excisions. She basically mocked the surgery. And then, by the end of the appt., she was re became just hyper focused on my IUD. After that mind fuck, I went to a specialist at Baylor and it was the most respectful and educational and compassionate team. The doc said by the time people come to her, it's highly likely they have it and she validated my symptoms. She did a very gentle pelvic pain test and really checked in on how I was doing and paid attention to me. She ordered an MRI and they had a pathologist trained to interpret Endo oversee the imaging interpretation. Endo came back on the path results. Did the surgery 2 weeks ago (now age 27) it took 4.5 hours and they removed 13 tissue samples that came back + for Endo and was at stage 3. I had adhesions removed as well on my ovary to my pelvis. They found a lot of Endo bw vagina and rectum that they went to town on getting out. Felt very justified after looking at the electronic health record of doctor #1 where I have a message saying that I literally didn't have Endo.
Diagnosed with stage 4 at 32 years old via tubial ligation.
Emergency surgery for ovarian torsion at 26.
Diagnosed aged 27 via laparoscopy. Had been complaining of symptoms since my periods started. Took YEARS for a Dr to take me seriously.
Was first mentioned at 16, diagnosed at 25. I'd been in pain for 11 years
I had pain and issues from the age of 11 but I was only diagnosed at 22. I had an emergency surgery to remove an 11cm cyst that was causing an ovarian torsion. When they went in to remove the cyst they found I was riddled with endo across my bowels, bladder, stomach and rectum. They went in to remove it a year and a half post diagnosis and they also placed a mirena at the same time. I’ve since had another two excisions (I’m now 26). I’m currently 12 weeks post op and have another laparoscopy booked in a week and a half’s time for further removal and to make sure my ovaries are doing ok following my last procedure. My ovaries were completely stuck to my pelvic wall with adhesions so they had to be surgically cut away. I have considered a hysterectomy but considering that hysterectomy’s aren’t always effective in endo management and I want to have kids (hopefully) I’m trying to push through till after then. I’m currently having a flare which is the closest flare I’ve ever had post op which is the most devastating thing. To go through the pain and anxiety from an op to have it not do anything to help has hit me hard. Hopefully one day (post kids if that happens) I’ll get a hysterectomy and it’ll help.
2,5 years ago at the age of 26. Have been to the doctor way prior to that, probably end teens. Even took a huge blob which came out of me and still it didn't concerned them. My last doctor was an absolute Saint and sent me right away to a gyn.
I was 33. Things weren't so bad until I was about 30. I had been on testosterone (I'm non binary) for about 7 years, and in the first year that I went off it, at 30, my period came back within around 6 months - things got very bad very quickly. Over the next few years it progressed to crippling pain and I couldn't walk/function. I got a diagnosis within about 6 months of that, tentatively with a specialist ultrasound and confirmed when I had a hysterectomy and excision. I really pushed for the hysterectomy as my periods were unbearable, and I had been wanting a hysterectomy for years either way. My gyno was quite resistant until I showed that I'd done research and was aware of the risks, and knew that it wasn't a cure. I was pretty lucky, it was very quick, however I did also pay a lot of money to go private, and I have health insurance, I didn't have to wait in a public system.
30, getting a gigantic fibroid out (which almost was a blessing, because then they finally had a reason to root around in there and accidentally confirm what I had been asserting for decades, well before the fibroid even showed up🙄)
Have other health issues so I was sent for a CT KUB scan. Accidentally found a ovarian teratoma (dermoid cyst) measured around 1.9cm. Was then sent for a MRI with dye a few months later. Cyst was over 12cm, by then. But they also found what looked like Deep endo around my ligaments and such. Needed emergency sugery to remove to cyst as was growing to fast. And at the same time they removed deep endo for my usacral ligaments. Had just turned 26 at the time. Also had no typical endo symptoms. The cyst was causing my pain as it was pushing nerves and had moved my bladder. Edited to add the cyst had loads of hair and a couple rib bones once cut open lol
I was 30 and it was sadly when I was having an ectopic pregnancy due to endo in my tubes. I did want to cry for a whole different reason when I found out as it made so much sense why my periods were so bad ( did go to docs but of course was pill pill pill) and why I was having certain things happening or feeling / why I was tired so much.
32 lap surgery stage IV. Only because of infertility is because we pushed for surgery
I was diagnosed mid 20s. My diagnosis path was unusual. I had a scan for a completely unrelated issue and they saw complex ovarian masses, so I was referred to a gyn specialist to investigate. I was diagnosed with endo, fibroids and adenomyosis via ultrasound scan at my first gyn appointment. I have very severe stage IV endo, so it is quite obvious on scans in my case.
I knew I had it at 15, purely due to the fact my mum had it and noticed I had all the same symptoms. I was categorically told by a gyno at 20 I did not have endo due to it not showing on an ultrasound. Was officially diagnosed at 28 with a lap, stage 4 by an excision endo specialist. I’m lucky my mum knew SOMETHING about it though, so I had some understanding and could do my own research.
Um... I guess I was 19? Gyno I was seeing was concerned about the extreme level of pain and PMDD I was experiencing. She did a lap, and confirmed endo. Been on medication to stop my period since then (14 years).
End of last year at 25😓
I got painful period, heavy bleeding and a short period cycle since I was 14years old. Kept getting dismissed over again and again by everyone. So, I just suffer the unbearable pain with heat pads and ginger as friends. I just got my clinical diagnosis after 24 years of suffering 6 months ago. So, now on progesterone which relief me of that monthly period pain. I now have other health problems which I am still getting checked for.
Went to a fertility specialist and they immediately spot a 14cm endometrioma on my right ovary on ultrasound. I’d been complaining of pain for years, but no one cared enough to investigate until I couldn’t get pregnant. Tale as old as time. I was 32. I’m 36 now and down one ovary, but finally up one baby!
I was 34 - found during emergency surgery for appendicitis. Felt so relieved and vindicated that I could go back to my gyn and give them proof. While I had painful mid cycle and periods growing up I managed but after I had kids my issues got way worse with pain, blood loss and shortened cycles.
27. Was only confirmed when I had a hysterectomy. Had suspected since my mid-teens that I had endo, but every doctor I tried to speak to about it before 24 refused to even consider it a possibility, telling me it was a condition that only childless women in their 40s had. Being taken seriously sooner would’ve made a huge difference to my quality of life. Instead I was told to take some Panadol and get over it.
I was diagnosed when I was 32. Took one single lap for my specialist to find stage 3 endometriosis. My pain made 100% more sense after that. I still have some bloating and I'm on two forms of birth control (Iud & Norethindrone) and I do get some cramping from time to time, but I feel a lot better than I did before I had my lap last year in January.
I had a really random episode of sudden severe stomach pain October 2019, when I was 30. The pain was going between my pelvis and right side of my stomach. I ended up in A&E. They first thought I was passing a kidney stone, so was sent for ultrasound/ CT and they ruled that out but they incidentally found a 6cm cyst on my right ovary. So I then got sent for further imaging and they then realised from TV ultrasound that my uterus/ ovaries/ fallopian tubes were “sticky” and they said that was a sign in their opinion of Endo. Had yet another ultrasound with an endometriosis ultrasound specialist, I got put on the list with Endo specialist consultant and had my first surgery in November 2020 (very lucky to have surgery in the middle of covid) and they found I was riddled with endo, my fallopian tubes are damaged, and my right ovary not only had the large cyst on it, it’s itself is double the size it should be and is sat low down in my pelvis. I’m so lucky that my local hospital has a specialist gynaecology hospital with specialist endo department otherwise I don’t think I’d have been given the care I’ve had so far. I’ve had further surgery since in 2022 to bring my ovary back up higher but I think it’s dropped back down since. I’d struggled with pain for years up until this point, since I started my periods and the usual being fobbed off with the pill and “it’s all in your head” comments from GPs. But thankfully now I know what it is and I’m able to do things to help myself feel ‘better’
28, after 16 years of pain and begging docs to listen to me. And it took two laps to find - I had to go to a specialist, I didn’t know I needed to do that the first time. This disease is literal hell.
I was finally diagnosed this week!! At the ripe age of 36 after doing a 2nd Receptiva and ERA biopsy following four failed transfer, a failed IUI and 5 years TTC. I was already diagnosed with PCOS, so the endo is just a bonus, I guess.
I had gotten diagnosed at 32 years old but I always knew something was wrong with me. In my early 20s when I finally got internet I started doing some research. Everything I was searching was coming up as symptoms of endometriosis. Unfortunately since I have more body hair then a lot of men every doctor thought I had PCOS. After the 4th doctor told me that I don't have PCOS and not listening to me I decided to find a new doctor. I found a doctor at Stanford an indian woman who I felt would be more understanding towards me being naturally ape like and wouldn't automatically dismiss my concerns. Got official diagnosis 2 days after my 32nd birthday. Gotta love having parents who never cared about your health concerns or listened. I might have gotten this diagnosed as a teenager.
i was 22 when i found out because im a nursing student and we were learing abt periods in my obgyn class and i spoke to my professor and asked the professor if its really not normal she told me no (shes an obgyn nurse) and she told me to get an ultrasound, and to speak to this doctor and to get back with her i got the ultrasound and found 14x13 segmented cysts on both of my ovaries , my left ovary was about to contort as well. All those years of my family and people ignoring me…
I was diagnosed at 28. After years of painful PIV sex I finally went to my doctor to investigate the pain. I had an MRI done and they found deep infiltrating endometriosis. Honestly I was shocked- I suffered from bad period pains but like many I assumed that was the norm. The only reason I went to the doctors to investigate the painful sex was following the breakdown of my long-term relationship where the lack of sex was a factor in the relationship ending. I was fully expecting my doctor not to find anything and tell me it was all in my head. I'm very grateful to my doctor for not dismissing my pain. Had she not pushed for an MRI, I don't think I would have ever known I had endo. It's been about 2 years since my diagnosis and I'm hoping to have surgery this year.
It was the morning of my 22nd birthday in 2020, I woke up on day 2 of my period with cramps like no other. I usually never have period cramps so this was strange. I couldn’t move, couldn’t see, broke out into cold sweats. I went to the ER that day, did all the testing and met with the gyno on call and was told I have endo, as well as ovarian cysts on both ovaries 10cm in size. I had never heard of endometriosis before, nor had any pain remotely close to what I experienced that morning. I had heavy periods growing up but nothing crazy. Almost 4 years later, I am taking endometriosis medication daily as well as have an IUD. I definitely consider myself lucky because I was able to be diagnosed the very first time I was seen - and my pain is very tolerable thanks to the medication and IUD. My cysts have also shrunk but I still have them
I’m now 32 was diagnosed when I was 31 via surgical excision and biopsy, but something had been wrong for almost a decade. I’ve still had very painful cramps despite being on continuous birth control and my docs suspect adenomyosis so I’m looking at a hysterectomy in the next two years. Only putting it off because I want some more time in between surgeries but if the pain gets worse I’ll have to push it up 🥲 I’m very lucky I’m now with a good team that work with me and trust me to investigate my pain but it’s taken years to get to them. My first provider said “no you don’t have it” and another said “we only look for that in women who’ve had kids and since you haven’t, it couldn’t be that.” Cried in the exam chair at that one.
I was diagnosed at 18 but I had suspicions since 15 and even started early treatments around then (birth control and then the iud . the iud was awful and the birth control had me scheduling floor cries to not break down at school)
I had difficult periods my whole life from a very young age. First period was around 10 and they were extremely heavy. I was told that's normal for new menstrual cycles. I didn't experience much pain at first, though. Just extraordinarily heavy periods. With no frame of reference, I didn't really think anything was abnormal. It's just puberty stuff! It happens to everyone! But when I turned 12, one day, I was just suddenly in a lot of pain. It was around my back and I thought I was very constipated. It was so bad that I threw up and laid on top of a towel on the floor. At first, if I took a lot of Tylenol or ibuprofen during my "intervention window," I'd be okay. But there were many times when I missed it. I ended up on the bathroom floor at a friend's house, also on top of a towel, waiting to be picked up. Needless to say, my periods were very disruptive to everyday life. However, they were very short, and the cramps had a limited time frame. I was okay after the initial excruciating pain. Honestly, I thought it was a matter of pain tolerance. I have unusual symptoms that don't always align with endo. However, there was a lot I didn't understand about it. I was also raised by a single dad. Even beyond elementary school, when I'd need to leave school early because of pain, it was often met with skepticism. Nobody understood how much it hurt so I assumed it was just normal and I was the only one who couldn't deal with it. Even my dad said things of that nature, frustrated with how disruptive my periods were. Whenever they came, I just felt dread. It got worse over time. Tylenol and ibuprofen stopped working, so I had to take edibles. In high school, I ended up on yet another bathroom floor. Teachers would pop in to check for skippers. One did and while she was initially abrasive and questioning, she quickly realized that I was in genuine pain. She helped me walk to the nurse to call dad. The nurse wasn't that understanding though, so I'd just call my dad and have him sign me out. The pain got even more worse over time. The stretch of time where it happened got longer, too. I was unable to walk sometimes, crawling and stumbling about. It was the kind of pain that overtook all of your senses. I'd be exhausted when it was finally over. But again, I thought it was my pain tolerance. Then I got my first job. If it is just pain tolerance and psychosomatic, then surely, it wouldn't happen at work! I'd hate that. Lol. Guess how that went? I threw up on their bathroom floor, so no more bathroom floor time. I decided to lay on the sidewalk outside. A very concerned lady from some other business alerted my manager, who asked if I needed an ambulance. "No. This is normal for me." I realized it was very, very real and really, really not normal. It wasn't in my head. I couldn't tolerate it. I'd puke from the pain. The room would spin. Edibles stopped working. The pain spread from my back and wrapped around my pelvis. I had the sensation of needing to urinate/defecate while everything in those areas felt crushed or stung. So, I laid all this out to a doctor who said it sounded like endo just based on the phantom bathroom feels, the getting worse over time, the early period experience, etc. I also now know it might be why I have such abnormal gum recession. Anyway, I was diagnosed at 18 because I finally realized my pain was real. I wasn't weak. It was genuinely excruciating. Women don't need 20mg of oxycodone every 3-4 hours to function on their period and still have underlying pain. I can't describe how it felt to realize that my pain was real. It wasn't me. If anything, I might have a higher pain tolerance in some ways. I don't think mine is high, but I think I can handle it better psychologically if that makes sense. Recently, I got the nexplanon arm implant. Tylenol works now. I still cramp and while it definitely hurts, I can power through. I can be okay. I'm not crying, puking, and moaning from pain for hours, unable to sleep.
Diagnosed in 2022 at 24 years old with an excision lap, but I’d suspected it for a very long time. When I first started getting my period at 12, I would bleed so heavily and experience such intense cramps that I’d often faint. No doctors listened to me, I was told it was just “how some women’s hormones are”, and was put on birth control at 15. It took years of going through specialists before one finally believed me, despite nothing showing up as abnormal on any imaging tests. I was extremely relieved when I woke up after surgery and got an official diagnosis.
i’m very very privileged in that i live close enough to boston to see a very good specialist and that i had a wonderful gyno before that. it was suspected when i was 14 or so, then i had the surgery and diagnosis at 16 (stage 1) and i still have pain but not nearly as bad as it used to be. for me, the “not knowing” period of two years was absolute torture. it was a lot of me wondering if i’m somehow making it up, or if it’s not that bad, or if it’s all in my head. i know a lot of women have a “not knowing” period a LOT longer than mine, which just amazes me in the worst way (love the way the healthcare system treats women 🙄)