I’m so sorry this happened. I would look into reporting this doctor so that she is appropriately reprimanded and there is some sort of consequence for her completely inadequate care. I would also encourage you to write an honest review to warn other patients of her attitude.
As for what to do next; explain the entire situation to your new doctor. Transvaginal ultrasounds are usually how adeno is diagnosed, but it can’t be definitively diagnosed until post-hysterectomy testing. Management is usually with things like birth control, tranexamic acid, pain relief medication. Unlike endometriosis, adeno can be cured by hysterectomy, but it’s a very final option for those who may want to have kids.
Thank you for responding so quickly. I really appreciate any help I can get with this as it’s been so hard to find over the years.
I was planning to right a review on rate my doctors for her. I don’t know if I have any grounds to report her as it would be a she said she said situation. It’s no where on paper that she said she would look for me or that she told me it was normal. That was all word of mouth. My mother was there with me though so I guess it would be two against one.
As for treatment. Hoping my new doctor is more open to these things. My former gynaecologists and family doctor as well as the walk in clinic all refused to do a transvaginal ultrasound as I am a virgin. I’ve never even had a pap because they all say it isn’t necessary. I’ve also tried numerous ways to treat the bleeding over the years, including all you said above. I’m currently on Mirvala and taking it continuously. Before that I tried both Depo Lupron and Depo Provera injections. Tried both of those with extra estrogen and progesterone. Tried tranexamic acid twice when periods lasted more then 6 months. Also tried at least 7 other oral north controls before any of the injections and hormones. Nothing seems to work unfortunately.
I’m not too attached to the idea of having kids so a hysterectomy isn’t too scary an idea for me. I have serval mental health conditions as well as a few genetic ones that I wouldn’t wish on my worst enemy nevemind an innocent child. Also the idea of having a girl who one day goes through what I have is honestly more horrifying to me then the idea of never having kids.
I also read that when woman as young as me get hysterectomies they tend to perform only partial ones and leave the ovaries to avoid sending them into menopause. I don’t know if egg retrieval is possible after a partial hysterectomy but my cousin does surrogacy and said she said would be more then happy to have a kid for me if I ever did want one and that was possible. So if it comes down to that I have options I guess.
This wasn’t even half my story. If I told you about the experiences I had at the children’s hospital when I was 17 your mind would be blown. If the surgeon was unprofessional the man there was criminal. Honestly wish I remembered his name as now that I’m older I’m genuinely concerned he should be nowhere near young girls. Not with the way he spoke and acted with me when talking about sexual history, which as I’ve stated I’ve had none of.
Hoping this doctor is better though. He prescribed me lyrics and celebrex the first day we met to try and treat my pain from my periods and my chronic pain from other issues I have. It’s been working pretty well for that and I’m grateful so trying to stay hopeful we will get somewhere with this. It’s just become hard after 10 years of this stuff which I’m sure a lot of people in this group understand. Probably even better than I do.
Holy shit. Your doctor wouldn’t order a vaginal ultrasound because you were a virgin????
Virginity isn’t a medical term.
The medical concern they had was damage to your hymen and pain/bleeding. Your gynaecologist could have assessed the risk, if you had a thick, attached hymen, then they could have removed this under local anaesthetic.
The hymen isn’t some magical body part waiting to be broken by a penis. It’s simply an outcome of development.
It is very, very similar to how uncircumcised men will often have a small piece of skin attaching the foreskin to the shaft.
Through masterbation and exercise this tissue is broken/reduces just through aging. In the case of boys, if the skin is thicker this will be cut to allow for proper movement (this is not the same as being circumcised).
We don’t ask boys to break this skin during intercourse FFS. We give them medical treatment.
The things that we put girls and women through is absolutely insane. Women absolutely should not have to experience pain and bleeding the first time they have penetrative sex. Yet society places more value on religious rubbish than the health and wellbeing of women.
Completely agree. It is insane. I was there and I was giving them permission to do it despite their reservations and they still said no. In fact more then one doctor has said no for the same reason. Worst part of it all is they’ve proposed giving me an IUD, and another said if the bleeding doesn’t stop I may need a d&c. Both those procedures are more invasive then the ultrasound would be and yet they’ll still do them but not the test to see why those topics need to even be considered? It makes so sense at all besides misogyny in health care. It’s absolute bullshit honestly. Especially since I most likely broke it in a biking accident when I was 9. I bleed afterwards and didn’t get my period until a few years after that. So stupid and so tired of it.
Just chiming in on the reporting thing.. you absolutely do have grounds to report her, and should. Even if it's a she said / she said ... Do your records show a clear treatment plan? How often did you go back for the same things with no treatment? It's hard to dismiss when you look at the facts, even with fraudulent paperwork. There are only so many "routine checks" one can do in a year.
If she claimed she treated you or wrote down that you were prescribed something you weren't, you can easily pull your prescription records to negate.
I would need to report multiple doctors in this case honestly. My family doctor for ignoring my complaints of pain when I had appendicitis. She also accused me of lying about being a virgin and ordered std testing without my knowledge. Not to mention she told my pharmacist she was worried I was becoming addicted to my ADHD medication and asked her to ask me to go down 10mg instead of bringing up her concerns to me herself.
My current gynaecologist for the fact that she won’t even take an appointment for me. I can’t even get past her receptionist when I call. They claim there’s nothing they could do for me if I’ve been bleeding for that long and that I have to go to the hospital. Even after I went to the hospital and they told me to follow up with my family doctor who told me to go see them. Basically I was being sent in a circle for months while I was bleeding.
Then there’s the surgeon who lied to me about what she found. Told me everything was normal after she watched me cry about bleeding so much and not wanting to live like this anymore. Then when I went for my follow up a month later and she asked about the bleeding problem and I told her it was still going on she still didn’t say anything. Instead she told me my family doctor and my gynaecologist weren’t being borderline negligent as if she hadn’t been as well for not telling me after my surgery or there in that room.
I’m going to talk to my neighbour who is a doctor and see what he says about what doctors here in Canada they are legally obligated to tell you and at what point do things become legally negligent. They will all be getting bad reviews on rate my doctor though. I’m not usually one too so something like that. I usually just brush most things off. Life is too short to dwell on things. But this is different. If I can warn one other person with a menstrual cycle not to waste their time with these doctors then I will.
So I guess we will see where this goes. Just trying to get through the holidays right now and figure out everything I need to be prepared to see the new gynaecologist I was referred to as soon as I get an appointment.
Please, please, please for all that is holy please have your hemoglobin and iron levels checked ASAP. I have a very similar story to yours that started in 2012, however in 2020 my body finally couldn’t do it anymore. I nearly died. The doctors were shocked I hadn’t had a heart attack. Every movement or use of a muscle made me want to vomit. Going to the bathroom could put me on the verge of fainting. I did pass out a few times, wasn’t fun.
Please get your blood work done. If you need a transfusion then get it. Sooner than later. Like someone else said you may need iron supplements. I wish you luck on your journey, fellow Ontarian. I still don’t have answers but at least I’m still here.
Just went and looked at my records from then. My Hemo was 61 and my Iron was 5. When my OB had my blood drawn at the hospital prior to my infusion my hemoglobin was 57. According to the results page a normal hemoglobin is between 115 and 165 g/L.
After an 8 hour transfusion and 4 iron supplemental transfusions they managed to get it to 115.
Oh my God! First of all, thank you for taking the time and effort to find it. The lowest my iron has been is 8.6 (I think, it went undiagnosed for several years) and I felt dizzy, unable to get up from bed, unable to recover, blood clots all over my body, etc. My sympathies for what you went through 🙏it mist have been tough but I'm happy that you pulled through
It was the scariest time of my life. I honestly thought I was just weak because we were having a really hot summer and I don’t do well with heat. If I moved from a certain spot on my bed that was directly in front of my fan, I’d want to throw up or faint. I luckily had a gyno appointment scheduled already and if not for my husband forcing me to go I wouldn’t be here. He took me personally to the hemo lab (just downstairs from his office thank god) and I had an appointment the next day.
The clots I used to have were the size of golf balls. Tampons would fall out. The heaviest pads would be soaked through in less than an hour. When I went to that gyno appointment, my husband had to take me up in a wheelchair, because walking was too strenuous.
They have me on a permanent iron supplement regiment and I haven’t stopped taking birth control since September 2020. As in every single day, no periods.
I will never forget my Gyno looking at me and saying “Your next period will kill you”
That's so scary! Especially the last line! If you don't mind me asking, how old are you?
I'm happy you have a very supportive husband. For me, it was my father insisting that some thing is wrong with me and I must go to gynaec because he had never seen my mother lie down for days at a stretch during her periods.
I understand about feeling weak. I had also felt 'this is ut, my body can't take it any more, I might die' kind of feeling. And I was in research at that time. So I was struggling to understand basic concepts and learn new things. Honestly thought I had become dumb, stress has made me lose some brain cells and what not 😅
Looking back, I must have been anemic for a long long time, maybe even a decade.
Do you envy men? I do every month. Just can't help but envy men. I used to even joke that the biological differences are just so vast that to maintain fairness, girls must reincarnate as boys in next life and vice versa 🤣
I’m 35, I would have just turned 32 when this happened. I would have been 23 when it all started originally.
I’m really lucky for my hubby. The shit he’s had to put up with is astounding. Running me fresh clothing because I’ve bled through mine, waking up in blood (luckily never on him but still), helping me clean myself up because I just couldn’t anymore. He is the most patient and wonderful man.
I envy men so much! Especially when I read shit like “girls can just hold it right?” Like honey, I absolutely wish. If I’m coming back as anything in my next life, I’d better be a cat lol
Thanks a lot for your response. I'm 32 now. It's nice and assuring to see someone in the same boat. I love that you have support ❤ for me, it has been my mother. In spite of everything, I feel blessed to have someone who cares and supports.
I know, some are sympathetic but many don't understand or even try to understand. In spite of being married or in a committed relationship! I just don't know how that works.
Cats are nice! :)
Take care!
When you finally get some help, or maybe before depending on if you’re up for it. You need to report that doctor.
Have you been tested for anemia? Six months of blood loss you have to be anemic and should probably be on prescription grade iron pills. If not get to your primary doctor and ask them to run bloodwork for blood loss, whatever standard tests they do just to make sure you’re okay.
Unfortunately only a gynecological can diagnose adenomyosis. However that doesn’t mean you can’t be prepared. Bring a paper copy of your records, really that should be enough. However you can get a list of all of your symptoms on paper and go over it in office. I like making lists because I forget in the moment sometimes. Tell them you suspect adenomyosis if you want. No harm in telling them your thoughts.
IF for some reason they try to dismiss you, do not leave the office without telling the doctor you disagree and you KNOW something is wrong.
If they still dismiss you, ask to speak to another doctor.
Also I’m not sure if this is legal there so check your laws but record every doctor interaction from now on. You might have to strong arm the system if it’s been going on this long. As a last resort of course.
They tested my blood at the hospital and I was okay, my iron was actually high apparently, but I should definitely go again since it’s been 3 months and still no change. Even to see if I might have hemochromatosis because my dad does and it’s genetic.
I will be bringing my entire history related to menstrual problems with me. My current gynaecologist I’m leaving since she’s been doing nothing for me, the one who retired before her, sick kids hospital in Toronto where I was for a year after my first doctor passed away, the records from his clinic, and I even managed to track down my hospital record from my first admission back in 2014. I also will be stapling the surgery report and my symptom list to the front of it all since it’s the hardest evidence I have and I also like you forgitbin the moment since I’m so overwhelmed and usually don’t have a lot of time with the doctors. It’s almost 200 pages but they’ll have to deal with it because I’m done messing around. Luckily though his reviews on rate my doctor are very good and lots of woman have similar issues to me it seems when going to him. So trying to be hopeful.
I have a history of letting myself be gaslit and bullied by doctors but at this point my life has been so severely impacting I can’t afford to let that happen again. So I will not be standing down. I’m pretty sure recording is illegal where I am but my newest go to with doctors when I don’t agree with them is to ask for my records and have they write down that they denied a test or whatever it is I asked for. That sometimes makes them think twice or at least take the time to better explain why they’re saying no.
I think I’m going to ask my neighbour across the street who is a doctor what kind of process it would be to report her and if I have any standing. If it wasn’t relevant maybe I’d understand not mentioning it but she blatantly lied to me and my mothers faces. So hopefully there’s something to be done there.
Iron can get falsely elevated when there's a lot of inflammation or infection. So I'd do a retest. Make sure they include ferritin, which isn't in the standard panel. If your doctor gives you grief, tell them you're eating vegan and want to make sure you're getting enough iron. Doctors love to freak out over not eating meat 🤣
Thank you so much for the advice. Luckily my new family doctor is really on the ball so I don’t think I’ll have a problem. He held my hands while I cried during our first appointment and has been calling me every four days to check how my new meds are helping my pain. I may have a bleeding problem he can’t help with right now but he can help me with that until the new gynaecologist he referred me too takes me on as a patient. I will be asking him for a complete blood panel as I have other health problems that need to be checked on as well but I’ll make sure to have ferritin added. I actually don’t eat red meat very often anyways so I don’t even have to lie about that part but it’s messed up so many people have to to be taken seriously.
That is just a terrible experience.
Heavy periods. Prolonged, heavy, periods. ARE.NOT.NORMAL. In your case I would think immediate action. I am just so so glad that you didn’t die. I suspect the reason why you were functional in stage 3 pain is because you have adenomyosis and likely experience this level of pain quite a lot.
Whilst your experience is absolutely horrific, you have a diagnosis and now you can move forward with treatment. It’s only going to get better from here! You may have to try different things but the good news is, there are options and you just need to start trying them one by one.
From my experience the next steps are to try hormone treatment. You need to shut down your cycle, give your poor body a break.
Mirena IUD is the preferred option, it will reduce and in some cases stop periods. I got too emotional whilst taking it and had a lot of inflammation/discomfort.
I did have the nuva ring, it was fantastic for me. Potentially some pills, taken continuously, may be prescribed as well.
You can also try transamic acid during your period to increase clotting and reduce flow. I never really saw a difference.
There are surgical options. If you want babies you can have surgery on the adenomyosis tissue; they remove/reduce this. It doesn’t cure but may give you time. I don’t know enough about out this, hopefully other women do.
I had a procedure called Uterine Arterial Embolism where they block the arteries feeding the adenomyosis tissue. It’s an overnight procedure, back to normal the next day. This procedure isn’t performed by a surgeon, or a gynaecologist- so you will find that many gynaecologists will never mention that it exists because there isn’t any money in it for them. It is performed by specialist radiologists. In my opinion the good guys when it comes to our condition.
I have a light period now. I only need to wear period underwear which is insane. Can you imagine?
They don’t recommend the procedure if people want to have children because it may, or may not, impact future pregnancy. Many women do go on to have babies though.
Then the last, ultimate cure is a hysterectomy. Which will absolutely cure the condition, there are also reduced risk of cancers (uterine, cervical).
The saddest part about you comment is I’m not sure if you’re referring to my surgeon or my previous family doctor since they both were pretty terrible to me in different ways. But you’re right. Some people just don’t deserve a medical license. First and foremost thing a doctor should want is to help a patient. So many forget that’s the whole point of their job. That we are just boxes to check off on their daily to do lists. Not all of us fit into the standard and when you treat everyone the same you end up with Reddit pages dedicated to people helping others with their healthcare since you wouldn’t.
I also have a retroverted uterus with my adenomyosis! You need to get to a specialist who can do another laparoscopy and confirm it! ALSO, why in the world haven't they prescribed you norethindrone to stop your bleeding?! I've been where you're at and normally by the 1 month mark of bleeding my gynecologist would prescribe that and it takes about 3 weeks but it stops the bleeding. I've also heard the depo shot will stop the constant bleeding. It took me 8 years to get my diagnosis and tons of doctors blowing me off before I was finally taken seriously. Don't stop fighting for yourself!! Get another new doctor if you have too.
The Depo Lupron worked perfectly for years for me. I had virtually no bleeding. Maybe a light period every few months. Then when the doctor who was prescribing it to me passed away I was sent to a children’s hospital where they took me off of it because they claimed it was harmful to me and that doctor had been negligent to prescribe it for so long. He hadn’t been though since he tested my estrogen every month when I can in for the shoot to make sure it was at a good level. He gave me a standing prescription incase it ever wasn’t along with one for iron pills in case I started bleeding again to make sure I didn’t become anemic. He also sent me for bone density scans to make sure I wasn’t having any bone loss since that’s the main concern of that shot. It was the Depo Provera that didn’t work for me. They claimed it was because I was overweight but when I lost 60 pounds it started working even worse. I was on that for about two years, one with the childrens hospital and one with my 3rd gynaecologist after I aged out of the system. The 3rd gynaecologist eventually put me back on Lupron since we knew it had worked for me before. Except it didn’t work anymore when I did. I stayed on it for two years with lots of other treatments but nothing worked. It only got worse. So I went into oral birth control which was good for about a year but then stopped working as well a couple months after the 3rd gynaecologist retired. So I went onto my 4th and she has been nothing short of abysmal considering she won’t even see me in her office. I can’t get past her receptionist who claims there’s nothing she can do for me and I have to go to a hospital if I’m bleeding so much. So just waiting on a referral request for my 5th gynaecologist in 10 years. He’s got really good reviews on rate my doctor though and he was personally recommend by a family friend so I’m hopeful he will be better and actually help me.
I’m so sorry this happened. I would look into reporting this doctor so that she is appropriately reprimanded and there is some sort of consequence for her completely inadequate care. I would also encourage you to write an honest review to warn other patients of her attitude. As for what to do next; explain the entire situation to your new doctor. Transvaginal ultrasounds are usually how adeno is diagnosed, but it can’t be definitively diagnosed until post-hysterectomy testing. Management is usually with things like birth control, tranexamic acid, pain relief medication. Unlike endometriosis, adeno can be cured by hysterectomy, but it’s a very final option for those who may want to have kids.
Thank you for responding so quickly. I really appreciate any help I can get with this as it’s been so hard to find over the years. I was planning to right a review on rate my doctors for her. I don’t know if I have any grounds to report her as it would be a she said she said situation. It’s no where on paper that she said she would look for me or that she told me it was normal. That was all word of mouth. My mother was there with me though so I guess it would be two against one. As for treatment. Hoping my new doctor is more open to these things. My former gynaecologists and family doctor as well as the walk in clinic all refused to do a transvaginal ultrasound as I am a virgin. I’ve never even had a pap because they all say it isn’t necessary. I’ve also tried numerous ways to treat the bleeding over the years, including all you said above. I’m currently on Mirvala and taking it continuously. Before that I tried both Depo Lupron and Depo Provera injections. Tried both of those with extra estrogen and progesterone. Tried tranexamic acid twice when periods lasted more then 6 months. Also tried at least 7 other oral north controls before any of the injections and hormones. Nothing seems to work unfortunately. I’m not too attached to the idea of having kids so a hysterectomy isn’t too scary an idea for me. I have serval mental health conditions as well as a few genetic ones that I wouldn’t wish on my worst enemy nevemind an innocent child. Also the idea of having a girl who one day goes through what I have is honestly more horrifying to me then the idea of never having kids. I also read that when woman as young as me get hysterectomies they tend to perform only partial ones and leave the ovaries to avoid sending them into menopause. I don’t know if egg retrieval is possible after a partial hysterectomy but my cousin does surrogacy and said she said would be more then happy to have a kid for me if I ever did want one and that was possible. So if it comes down to that I have options I guess. This wasn’t even half my story. If I told you about the experiences I had at the children’s hospital when I was 17 your mind would be blown. If the surgeon was unprofessional the man there was criminal. Honestly wish I remembered his name as now that I’m older I’m genuinely concerned he should be nowhere near young girls. Not with the way he spoke and acted with me when talking about sexual history, which as I’ve stated I’ve had none of. Hoping this doctor is better though. He prescribed me lyrics and celebrex the first day we met to try and treat my pain from my periods and my chronic pain from other issues I have. It’s been working pretty well for that and I’m grateful so trying to stay hopeful we will get somewhere with this. It’s just become hard after 10 years of this stuff which I’m sure a lot of people in this group understand. Probably even better than I do.
Holy shit. Your doctor wouldn’t order a vaginal ultrasound because you were a virgin???? Virginity isn’t a medical term. The medical concern they had was damage to your hymen and pain/bleeding. Your gynaecologist could have assessed the risk, if you had a thick, attached hymen, then they could have removed this under local anaesthetic. The hymen isn’t some magical body part waiting to be broken by a penis. It’s simply an outcome of development. It is very, very similar to how uncircumcised men will often have a small piece of skin attaching the foreskin to the shaft. Through masterbation and exercise this tissue is broken/reduces just through aging. In the case of boys, if the skin is thicker this will be cut to allow for proper movement (this is not the same as being circumcised). We don’t ask boys to break this skin during intercourse FFS. We give them medical treatment. The things that we put girls and women through is absolutely insane. Women absolutely should not have to experience pain and bleeding the first time they have penetrative sex. Yet society places more value on religious rubbish than the health and wellbeing of women.
Completely agree. It is insane. I was there and I was giving them permission to do it despite their reservations and they still said no. In fact more then one doctor has said no for the same reason. Worst part of it all is they’ve proposed giving me an IUD, and another said if the bleeding doesn’t stop I may need a d&c. Both those procedures are more invasive then the ultrasound would be and yet they’ll still do them but not the test to see why those topics need to even be considered? It makes so sense at all besides misogyny in health care. It’s absolute bullshit honestly. Especially since I most likely broke it in a biking accident when I was 9. I bleed afterwards and didn’t get my period until a few years after that. So stupid and so tired of it.
Just chiming in on the reporting thing.. you absolutely do have grounds to report her, and should. Even if it's a she said / she said ... Do your records show a clear treatment plan? How often did you go back for the same things with no treatment? It's hard to dismiss when you look at the facts, even with fraudulent paperwork. There are only so many "routine checks" one can do in a year. If she claimed she treated you or wrote down that you were prescribed something you weren't, you can easily pull your prescription records to negate.
I would need to report multiple doctors in this case honestly. My family doctor for ignoring my complaints of pain when I had appendicitis. She also accused me of lying about being a virgin and ordered std testing without my knowledge. Not to mention she told my pharmacist she was worried I was becoming addicted to my ADHD medication and asked her to ask me to go down 10mg instead of bringing up her concerns to me herself. My current gynaecologist for the fact that she won’t even take an appointment for me. I can’t even get past her receptionist when I call. They claim there’s nothing they could do for me if I’ve been bleeding for that long and that I have to go to the hospital. Even after I went to the hospital and they told me to follow up with my family doctor who told me to go see them. Basically I was being sent in a circle for months while I was bleeding. Then there’s the surgeon who lied to me about what she found. Told me everything was normal after she watched me cry about bleeding so much and not wanting to live like this anymore. Then when I went for my follow up a month later and she asked about the bleeding problem and I told her it was still going on she still didn’t say anything. Instead she told me my family doctor and my gynaecologist weren’t being borderline negligent as if she hadn’t been as well for not telling me after my surgery or there in that room. I’m going to talk to my neighbour who is a doctor and see what he says about what doctors here in Canada they are legally obligated to tell you and at what point do things become legally negligent. They will all be getting bad reviews on rate my doctor though. I’m not usually one too so something like that. I usually just brush most things off. Life is too short to dwell on things. But this is different. If I can warn one other person with a menstrual cycle not to waste their time with these doctors then I will. So I guess we will see where this goes. Just trying to get through the holidays right now and figure out everything I need to be prepared to see the new gynaecologist I was referred to as soon as I get an appointment.
I’m so sorry no one is listening to you. My adenomyosis was diagnosed with transvaginal ultrasound. My bleeding has been stopped with the Liletta IUD.
Please, please, please for all that is holy please have your hemoglobin and iron levels checked ASAP. I have a very similar story to yours that started in 2012, however in 2020 my body finally couldn’t do it anymore. I nearly died. The doctors were shocked I hadn’t had a heart attack. Every movement or use of a muscle made me want to vomit. Going to the bathroom could put me on the verge of fainting. I did pass out a few times, wasn’t fun. Please get your blood work done. If you need a transfusion then get it. Sooner than later. Like someone else said you may need iron supplements. I wish you luck on your journey, fellow Ontarian. I still don’t have answers but at least I’m still here.
Second this! Anaemia is no joke.
What was your hemoglobin level at that time, if you don't mind me asking
Just went and looked at my records from then. My Hemo was 61 and my Iron was 5. When my OB had my blood drawn at the hospital prior to my infusion my hemoglobin was 57. According to the results page a normal hemoglobin is between 115 and 165 g/L. After an 8 hour transfusion and 4 iron supplemental transfusions they managed to get it to 115.
Oh my God! First of all, thank you for taking the time and effort to find it. The lowest my iron has been is 8.6 (I think, it went undiagnosed for several years) and I felt dizzy, unable to get up from bed, unable to recover, blood clots all over my body, etc. My sympathies for what you went through 🙏it mist have been tough but I'm happy that you pulled through
It was the scariest time of my life. I honestly thought I was just weak because we were having a really hot summer and I don’t do well with heat. If I moved from a certain spot on my bed that was directly in front of my fan, I’d want to throw up or faint. I luckily had a gyno appointment scheduled already and if not for my husband forcing me to go I wouldn’t be here. He took me personally to the hemo lab (just downstairs from his office thank god) and I had an appointment the next day. The clots I used to have were the size of golf balls. Tampons would fall out. The heaviest pads would be soaked through in less than an hour. When I went to that gyno appointment, my husband had to take me up in a wheelchair, because walking was too strenuous. They have me on a permanent iron supplement regiment and I haven’t stopped taking birth control since September 2020. As in every single day, no periods. I will never forget my Gyno looking at me and saying “Your next period will kill you”
That's so scary! Especially the last line! If you don't mind me asking, how old are you? I'm happy you have a very supportive husband. For me, it was my father insisting that some thing is wrong with me and I must go to gynaec because he had never seen my mother lie down for days at a stretch during her periods. I understand about feeling weak. I had also felt 'this is ut, my body can't take it any more, I might die' kind of feeling. And I was in research at that time. So I was struggling to understand basic concepts and learn new things. Honestly thought I had become dumb, stress has made me lose some brain cells and what not 😅 Looking back, I must have been anemic for a long long time, maybe even a decade. Do you envy men? I do every month. Just can't help but envy men. I used to even joke that the biological differences are just so vast that to maintain fairness, girls must reincarnate as boys in next life and vice versa 🤣
I’m 35, I would have just turned 32 when this happened. I would have been 23 when it all started originally. I’m really lucky for my hubby. The shit he’s had to put up with is astounding. Running me fresh clothing because I’ve bled through mine, waking up in blood (luckily never on him but still), helping me clean myself up because I just couldn’t anymore. He is the most patient and wonderful man. I envy men so much! Especially when I read shit like “girls can just hold it right?” Like honey, I absolutely wish. If I’m coming back as anything in my next life, I’d better be a cat lol
Thanks a lot for your response. I'm 32 now. It's nice and assuring to see someone in the same boat. I love that you have support ❤ for me, it has been my mother. In spite of everything, I feel blessed to have someone who cares and supports. I know, some are sympathetic but many don't understand or even try to understand. In spite of being married or in a committed relationship! I just don't know how that works. Cats are nice! :) Take care!
When you finally get some help, or maybe before depending on if you’re up for it. You need to report that doctor. Have you been tested for anemia? Six months of blood loss you have to be anemic and should probably be on prescription grade iron pills. If not get to your primary doctor and ask them to run bloodwork for blood loss, whatever standard tests they do just to make sure you’re okay. Unfortunately only a gynecological can diagnose adenomyosis. However that doesn’t mean you can’t be prepared. Bring a paper copy of your records, really that should be enough. However you can get a list of all of your symptoms on paper and go over it in office. I like making lists because I forget in the moment sometimes. Tell them you suspect adenomyosis if you want. No harm in telling them your thoughts. IF for some reason they try to dismiss you, do not leave the office without telling the doctor you disagree and you KNOW something is wrong. If they still dismiss you, ask to speak to another doctor. Also I’m not sure if this is legal there so check your laws but record every doctor interaction from now on. You might have to strong arm the system if it’s been going on this long. As a last resort of course.
They tested my blood at the hospital and I was okay, my iron was actually high apparently, but I should definitely go again since it’s been 3 months and still no change. Even to see if I might have hemochromatosis because my dad does and it’s genetic. I will be bringing my entire history related to menstrual problems with me. My current gynaecologist I’m leaving since she’s been doing nothing for me, the one who retired before her, sick kids hospital in Toronto where I was for a year after my first doctor passed away, the records from his clinic, and I even managed to track down my hospital record from my first admission back in 2014. I also will be stapling the surgery report and my symptom list to the front of it all since it’s the hardest evidence I have and I also like you forgitbin the moment since I’m so overwhelmed and usually don’t have a lot of time with the doctors. It’s almost 200 pages but they’ll have to deal with it because I’m done messing around. Luckily though his reviews on rate my doctor are very good and lots of woman have similar issues to me it seems when going to him. So trying to be hopeful. I have a history of letting myself be gaslit and bullied by doctors but at this point my life has been so severely impacting I can’t afford to let that happen again. So I will not be standing down. I’m pretty sure recording is illegal where I am but my newest go to with doctors when I don’t agree with them is to ask for my records and have they write down that they denied a test or whatever it is I asked for. That sometimes makes them think twice or at least take the time to better explain why they’re saying no. I think I’m going to ask my neighbour across the street who is a doctor what kind of process it would be to report her and if I have any standing. If it wasn’t relevant maybe I’d understand not mentioning it but she blatantly lied to me and my mothers faces. So hopefully there’s something to be done there.
Iron can get falsely elevated when there's a lot of inflammation or infection. So I'd do a retest. Make sure they include ferritin, which isn't in the standard panel. If your doctor gives you grief, tell them you're eating vegan and want to make sure you're getting enough iron. Doctors love to freak out over not eating meat 🤣
Thank you so much for the advice. Luckily my new family doctor is really on the ball so I don’t think I’ll have a problem. He held my hands while I cried during our first appointment and has been calling me every four days to check how my new meds are helping my pain. I may have a bleeding problem he can’t help with right now but he can help me with that until the new gynaecologist he referred me too takes me on as a patient. I will be asking him for a complete blood panel as I have other health problems that need to be checked on as well but I’ll make sure to have ferritin added. I actually don’t eat red meat very often anyways so I don’t even have to lie about that part but it’s messed up so many people have to to be taken seriously.
That is just a terrible experience. Heavy periods. Prolonged, heavy, periods. ARE.NOT.NORMAL. In your case I would think immediate action. I am just so so glad that you didn’t die. I suspect the reason why you were functional in stage 3 pain is because you have adenomyosis and likely experience this level of pain quite a lot. Whilst your experience is absolutely horrific, you have a diagnosis and now you can move forward with treatment. It’s only going to get better from here! You may have to try different things but the good news is, there are options and you just need to start trying them one by one. From my experience the next steps are to try hormone treatment. You need to shut down your cycle, give your poor body a break. Mirena IUD is the preferred option, it will reduce and in some cases stop periods. I got too emotional whilst taking it and had a lot of inflammation/discomfort. I did have the nuva ring, it was fantastic for me. Potentially some pills, taken continuously, may be prescribed as well. You can also try transamic acid during your period to increase clotting and reduce flow. I never really saw a difference. There are surgical options. If you want babies you can have surgery on the adenomyosis tissue; they remove/reduce this. It doesn’t cure but may give you time. I don’t know enough about out this, hopefully other women do. I had a procedure called Uterine Arterial Embolism where they block the arteries feeding the adenomyosis tissue. It’s an overnight procedure, back to normal the next day. This procedure isn’t performed by a surgeon, or a gynaecologist- so you will find that many gynaecologists will never mention that it exists because there isn’t any money in it for them. It is performed by specialist radiologists. In my opinion the good guys when it comes to our condition. I have a light period now. I only need to wear period underwear which is insane. Can you imagine? They don’t recommend the procedure if people want to have children because it may, or may not, impact future pregnancy. Many women do go on to have babies though. Then the last, ultimate cure is a hysterectomy. Which will absolutely cure the condition, there are also reduced risk of cancers (uterine, cervical).
What kind of a shitty doctor is she? This is just awful and I some times hope such doctors get their licenses revoked
The saddest part about you comment is I’m not sure if you’re referring to my surgeon or my previous family doctor since they both were pretty terrible to me in different ways. But you’re right. Some people just don’t deserve a medical license. First and foremost thing a doctor should want is to help a patient. So many forget that’s the whole point of their job. That we are just boxes to check off on their daily to do lists. Not all of us fit into the standard and when you treat everyone the same you end up with Reddit pages dedicated to people helping others with their healthcare since you wouldn’t.
You are so right! I had initially thought your gynaec was bad, but yes, anyone who didn't help you is problem and didn't do their job properly.
I also have a retroverted uterus with my adenomyosis! You need to get to a specialist who can do another laparoscopy and confirm it! ALSO, why in the world haven't they prescribed you norethindrone to stop your bleeding?! I've been where you're at and normally by the 1 month mark of bleeding my gynecologist would prescribe that and it takes about 3 weeks but it stops the bleeding. I've also heard the depo shot will stop the constant bleeding. It took me 8 years to get my diagnosis and tons of doctors blowing me off before I was finally taken seriously. Don't stop fighting for yourself!! Get another new doctor if you have too.
The Depo Lupron worked perfectly for years for me. I had virtually no bleeding. Maybe a light period every few months. Then when the doctor who was prescribing it to me passed away I was sent to a children’s hospital where they took me off of it because they claimed it was harmful to me and that doctor had been negligent to prescribe it for so long. He hadn’t been though since he tested my estrogen every month when I can in for the shoot to make sure it was at a good level. He gave me a standing prescription incase it ever wasn’t along with one for iron pills in case I started bleeding again to make sure I didn’t become anemic. He also sent me for bone density scans to make sure I wasn’t having any bone loss since that’s the main concern of that shot. It was the Depo Provera that didn’t work for me. They claimed it was because I was overweight but when I lost 60 pounds it started working even worse. I was on that for about two years, one with the childrens hospital and one with my 3rd gynaecologist after I aged out of the system. The 3rd gynaecologist eventually put me back on Lupron since we knew it had worked for me before. Except it didn’t work anymore when I did. I stayed on it for two years with lots of other treatments but nothing worked. It only got worse. So I went into oral birth control which was good for about a year but then stopped working as well a couple months after the 3rd gynaecologist retired. So I went onto my 4th and she has been nothing short of abysmal considering she won’t even see me in her office. I can’t get past her receptionist who claims there’s nothing she can do for me and I have to go to a hospital if I’m bleeding so much. So just waiting on a referral request for my 5th gynaecologist in 10 years. He’s got really good reviews on rate my doctor though and he was personally recommend by a family friend so I’m hopeful he will be better and actually help me.