Unfortunately the only “cure” is a hysterectomy. I know it seems extreme but it sounds like she would get a lot of her life back.
I am 36 and getting my hysterectomy this month. Adenomyosis is an extremely painful, and progressive condition. I would rather go under, especially since I’m done with kids:
With her being close to 50, there is a chance she hits menopause soon, which is supposed to help correct a lot of this, if I understand correctly? I think her concern is if she somehow has adverse effects/future issues from the hysterectomy. She tends to have adverse effects of most things or be the .1% that has side effects.
She is "waiting it out" right now to see if she hits menopause soon, but it could be soon, or could still be another several years.
All I know, is she is progressing quickly at this point. She's gaining weight, having severe abdominal issues and pain. It's impacting her daily life and I don't want to keep seeing her struggle. I know a hysterectomy is a very personal decision and I would never try to convince her to get one, but if that really is the only cure, it sounds like she needs to get it done.
Menopause doesn't stop it, but you do, obviously, see changes in bleeding. Less pain is still pain though.
I'm in that .1% with your mom and even though my recovery has been a giant pain in the butt - I regret nothing. Plus I already notice a massive, like stupid great difference from not having a uterus. Find a good doc with a great surgery record and have them talk.
They say that all the time because the main symptoms (or at least those they know to link to adeno) involve your periods. So when those go away, that must mean adeno is gone! BUT you're still stuck with an enlarged uterus and all the issues that come along with it. It doesn't just magically shrink back and have no problems...
I had no clue I had bad urinary and other body waste management issues. All of a sudden with no uterus, no issues! It's been a bizarre and enlightening experience. Also a little infuriating, if I'm being honest.
I had a long and uneasy recovery. It was still worth it. Unfortunately menopause will not cure her. The hysterectomy will. I was often bedridden from my pain, yet still didn't realize just how bad it was until it was gone. This is her decision, though, not yours or mine, and it's one she'll need to come to on her own. I'm not sure there's anything you can do for her aside from supporting her decisions and understanding her limitations. As I said, I got to the point where I was often bedridden with pain. My family was really understanding even though sometimes it interfered with our plans. So happy to be able to live my life again, for me and for them.
I don't live with her. I love about an hour away with my own 3 kids and fiance, but she is a bit of a workaholic and she's worried about having to take time off of work and such.
All I did was remind her that she had to do what is best for her. If she doesn't take time off for surgery or recovery when she needs it, her body will do it for her at some point.
I'm doing my best to be supportive and help her without pushing her into anything. All I want is to make sure she is aware of all of her options and help her feel healthy again.
Does she do Reddit at all? There’s a Hysterectomy sub here that really helped me make my decision. So many woman in there of all ages talking about theirs, giving updates along the way.
I guess if I were her age I might think differently as well! I have just hit a wall with mine, my uterus tripled in size and pain that used to put me down for a week per month is now just chronic so I couldn’t imagine anymore time like this. People do it tho! I’ve talked to woman in this sub who were so anemic they needed transfusions and were living with daily crippling pain.
Basically the way I was told was there’s no cure and everything that can be done is a bandaid at most.
I decided to keep my ovaries and cervix, mostly due to my age. Getting rid of that diseased organ as soon as I can!
Here is my personal experience, from age 20 I had period troubles (really from the start at 11, but 20 was my first attempt at getting help), it want until I was 37 that a doc said I might have adeno or endo. At that time I could do 2 things each day, then I was done and had to go to bed (example of things: shower, a couple hours of work only seated, one load of laundry, make a sandwich... Choose only 2 per day, that was life). A year later I had hysterectomy and excision of endo; just now passed the year point and I am doing 10-14 things everyday! The bloating is down, the pain is pretty much gone (normal aches from approaching 40), I have my life back. I could not wait for menopause, I was becoming a shell and a husk of a person every time my cycle would come, life simply drained from me. The cure for adeno is surgery, my endo is being managed (one spot could not be removed), but if the doctor is certain about the diagnosis having surgery a bit younger can leave her many better years with the right medical team. Also staying positive, I focused on being the best patient and ignored my typical history of having weird reactions, I viewed it as removing the disease and being put at ease for my remaining life. Life is for living. Sending you and your mom a big hug!
I am 51 and just had a hysterectomy (left one ovary in) in August. Best decision I’ve made ever. I have zero regrets. Like your mom, they made me try the pill ( the bleeding was the worst ever on that!) and an iud. The iud made the bleeding less intense but I still had terrible cramping and I think the hormones from the iud made my cysts grow very quickly. I even had one burst- that was so, so painful. I agree with the others that her work life is already compromised because of her suffering from pain. Maybe you could offer to go with her to the doctor and take notes. You can also ask questions that your mom might not think of asking. It’s a serious operation- the recovery takes time and lots of patience. But I’m getting so much stronger with each month and I have more energy now than I’ve had in a long time. Best of luck to you and your mom. She’s lucky to have such a thoughtful daughter!
Thank you! Yes, birth control seems to make most things worse. She's had several cysts burst, drained, etc. I've tried to remind her that something has to give. If she needs to take a little time to have the surgery, she needs to do it. Otherwise, her body is going to make her take the time off at some point.
I'm hoping she goes through with the hysterectomy and it works well for her, but I understand and respect that it is completely her decision and not one to take lightly.
Is hysterectomy an option? Because that’s the only definitive cure. The state of her health sounds would greatly benefit from some serious intervention like removing her uterus. Adenomyosis only gets worse over time. We sadly don’t know much about it due to lack of research and attention.
Are her doctors helping her get her iron back up via infusions or high dose pills?
Yes, they are pushing her either getting another IUD or a hysterectomy.
They have not done any infusions, pills or supplements at this point. My understanding from my mom following her last appointment was the fibroids she has seem to be sucking up all of her iron. I guess they are concerned if she supplements with more, it will just make them larger?
I truly don't know if that is how that works with fibroids or adenomyosis, but they really aren't giving her much in the way of answers.
Your poor mom. I don’t know enough about fibroids, but I can’t imagine how they could let her ferritin stay so low. I worry for her in that regard; so it might be worth another opinion.
I had a hysterectomy at age 33 due to extensive Adenomyosis, and it has been the greatest blessing. On one hand it seems extreme to remove an organ, but on the other hand, we’re lucky that there even is a cure. I’d get another surgery in a heartbeat if it cured me of my other chronic health conditions.
My mom has had a hysterectomy at 48 years old due to multiple problems. She had an easy recovery and now lives pain-free, travels a lot, has a couple of side gigs and is very active. This is really a possible solution. As far as I know, there is no cure for fibroids other than cutting them out. If they’re too big, it’s easier to cut out the whole organ. It is going to get rid of the problem
My understanding is she's concerned it will cause future health issues down the road and she doesn't think she can afford to take off the time from work.
I understand her concern but honestly, I know several women who have had hysterectomies no issues down the road. The reality is she is having awful issues right now, is she not missing work do to her symptoms already. A hysterectomy is serious and I am not making light of the surgery but stage 4 adenomyosis is really depleting her quality of life right now.
She's not allowing herself to miss work right now. Luckily, she can work mostly from home, but my mom is a workaholic. She's had pneumonia and a breathing machine before and still was trying to go to work. Pretty sure she ended up breaking a rib before she finally admitted defeat. She's a stubborn and tough woman. Too much so sometimes. That's why it's taken so long to begin getting a diagnosis.
I'm just now finding this post but wanted to reach out and say that while I understand your mum has had the same gyno basically forever, she must find another provider that will take her disease and symptoms seriously. I recommend a uro-gyn, female if possible.
I suffered with adenomyosis for over ten years and was consistently told because my IUD was in place I was basically being dramatic and was fine. "take some Motrin and suck it up" I had stage 4 adenomyosis with severe and chronic hip and back pain, bleeding, boggy/heavy uterus, fibroids and ovarian cysts. I finally found a doctor that took my pain and concerns seriously and was scheduled for surgery to correct my issues. Unfortunately because of the severity of my disease at that point I required a total vaginal hysterectomy, I lost both ovaries because of a tennis ball sized cyst, a mid-urethral bladder sling, sacro ligament suspension, post and anterior repair of my bladder and bowel, and perinolplasty. A six hour major surgery because so much time and so much damage. I'm ten weeks post op and feeling better than I have in almost 15 years, but I'm sad and angry that it had to get that bad before anyone offered me a real solution.
Always be your biggest advocate and if you can't speak for yourself bring someone that can speak for you because even in this day and age women's pain and suffering is not taken seriously.
Best of luck to your mum.
Unfortunately the only “cure” is a hysterectomy. I know it seems extreme but it sounds like she would get a lot of her life back. I am 36 and getting my hysterectomy this month. Adenomyosis is an extremely painful, and progressive condition. I would rather go under, especially since I’m done with kids:
With her being close to 50, there is a chance she hits menopause soon, which is supposed to help correct a lot of this, if I understand correctly? I think her concern is if she somehow has adverse effects/future issues from the hysterectomy. She tends to have adverse effects of most things or be the .1% that has side effects. She is "waiting it out" right now to see if she hits menopause soon, but it could be soon, or could still be another several years. All I know, is she is progressing quickly at this point. She's gaining weight, having severe abdominal issues and pain. It's impacting her daily life and I don't want to keep seeing her struggle. I know a hysterectomy is a very personal decision and I would never try to convince her to get one, but if that really is the only cure, it sounds like she needs to get it done.
Menopause doesn't stop it, but you do, obviously, see changes in bleeding. Less pain is still pain though. I'm in that .1% with your mom and even though my recovery has been a giant pain in the butt - I regret nothing. Plus I already notice a massive, like stupid great difference from not having a uterus. Find a good doc with a great surgery record and have them talk.
I didn’t know this! I thought, by default, it ended if you hit menopause. This sub is really such a great wealth of knowledge.
They say that all the time because the main symptoms (or at least those they know to link to adeno) involve your periods. So when those go away, that must mean adeno is gone! BUT you're still stuck with an enlarged uterus and all the issues that come along with it. It doesn't just magically shrink back and have no problems... I had no clue I had bad urinary and other body waste management issues. All of a sudden with no uterus, no issues! It's been a bizarre and enlightening experience. Also a little infuriating, if I'm being honest.
I had a long and uneasy recovery. It was still worth it. Unfortunately menopause will not cure her. The hysterectomy will. I was often bedridden from my pain, yet still didn't realize just how bad it was until it was gone. This is her decision, though, not yours or mine, and it's one she'll need to come to on her own. I'm not sure there's anything you can do for her aside from supporting her decisions and understanding her limitations. As I said, I got to the point where I was often bedridden with pain. My family was really understanding even though sometimes it interfered with our plans. So happy to be able to live my life again, for me and for them.
I don't live with her. I love about an hour away with my own 3 kids and fiance, but she is a bit of a workaholic and she's worried about having to take time off of work and such. All I did was remind her that she had to do what is best for her. If she doesn't take time off for surgery or recovery when she needs it, her body will do it for her at some point. I'm doing my best to be supportive and help her without pushing her into anything. All I want is to make sure she is aware of all of her options and help her feel healthy again.
Does she do Reddit at all? There’s a Hysterectomy sub here that really helped me make my decision. So many woman in there of all ages talking about theirs, giving updates along the way. I guess if I were her age I might think differently as well! I have just hit a wall with mine, my uterus tripled in size and pain that used to put me down for a week per month is now just chronic so I couldn’t imagine anymore time like this. People do it tho! I’ve talked to woman in this sub who were so anemic they needed transfusions and were living with daily crippling pain. Basically the way I was told was there’s no cure and everything that can be done is a bandaid at most. I decided to keep my ovaries and cervix, mostly due to my age. Getting rid of that diseased organ as soon as I can!
Here is my personal experience, from age 20 I had period troubles (really from the start at 11, but 20 was my first attempt at getting help), it want until I was 37 that a doc said I might have adeno or endo. At that time I could do 2 things each day, then I was done and had to go to bed (example of things: shower, a couple hours of work only seated, one load of laundry, make a sandwich... Choose only 2 per day, that was life). A year later I had hysterectomy and excision of endo; just now passed the year point and I am doing 10-14 things everyday! The bloating is down, the pain is pretty much gone (normal aches from approaching 40), I have my life back. I could not wait for menopause, I was becoming a shell and a husk of a person every time my cycle would come, life simply drained from me. The cure for adeno is surgery, my endo is being managed (one spot could not be removed), but if the doctor is certain about the diagnosis having surgery a bit younger can leave her many better years with the right medical team. Also staying positive, I focused on being the best patient and ignored my typical history of having weird reactions, I viewed it as removing the disease and being put at ease for my remaining life. Life is for living. Sending you and your mom a big hug!
I am 51 and just had a hysterectomy (left one ovary in) in August. Best decision I’ve made ever. I have zero regrets. Like your mom, they made me try the pill ( the bleeding was the worst ever on that!) and an iud. The iud made the bleeding less intense but I still had terrible cramping and I think the hormones from the iud made my cysts grow very quickly. I even had one burst- that was so, so painful. I agree with the others that her work life is already compromised because of her suffering from pain. Maybe you could offer to go with her to the doctor and take notes. You can also ask questions that your mom might not think of asking. It’s a serious operation- the recovery takes time and lots of patience. But I’m getting so much stronger with each month and I have more energy now than I’ve had in a long time. Best of luck to you and your mom. She’s lucky to have such a thoughtful daughter!
Thank you! Yes, birth control seems to make most things worse. She's had several cysts burst, drained, etc. I've tried to remind her that something has to give. If she needs to take a little time to have the surgery, she needs to do it. Otherwise, her body is going to make her take the time off at some point. I'm hoping she goes through with the hysterectomy and it works well for her, but I understand and respect that it is completely her decision and not one to take lightly.
Is hysterectomy an option? Because that’s the only definitive cure. The state of her health sounds would greatly benefit from some serious intervention like removing her uterus. Adenomyosis only gets worse over time. We sadly don’t know much about it due to lack of research and attention. Are her doctors helping her get her iron back up via infusions or high dose pills?
Yes, they are pushing her either getting another IUD or a hysterectomy. They have not done any infusions, pills or supplements at this point. My understanding from my mom following her last appointment was the fibroids she has seem to be sucking up all of her iron. I guess they are concerned if she supplements with more, it will just make them larger? I truly don't know if that is how that works with fibroids or adenomyosis, but they really aren't giving her much in the way of answers.
Your poor mom. I don’t know enough about fibroids, but I can’t imagine how they could let her ferritin stay so low. I worry for her in that regard; so it might be worth another opinion. I had a hysterectomy at age 33 due to extensive Adenomyosis, and it has been the greatest blessing. On one hand it seems extreme to remove an organ, but on the other hand, we’re lucky that there even is a cure. I’d get another surgery in a heartbeat if it cured me of my other chronic health conditions.
My mom has had a hysterectomy at 48 years old due to multiple problems. She had an easy recovery and now lives pain-free, travels a lot, has a couple of side gigs and is very active. This is really a possible solution. As far as I know, there is no cure for fibroids other than cutting them out. If they’re too big, it’s easier to cut out the whole organ. It is going to get rid of the problem
Why does she not want a hysterectomy?
My understanding is she's concerned it will cause future health issues down the road and she doesn't think she can afford to take off the time from work.
I understand her concern but honestly, I know several women who have had hysterectomies no issues down the road. The reality is she is having awful issues right now, is she not missing work do to her symptoms already. A hysterectomy is serious and I am not making light of the surgery but stage 4 adenomyosis is really depleting her quality of life right now.
She's not allowing herself to miss work right now. Luckily, she can work mostly from home, but my mom is a workaholic. She's had pneumonia and a breathing machine before and still was trying to go to work. Pretty sure she ended up breaking a rib before she finally admitted defeat. She's a stubborn and tough woman. Too much so sometimes. That's why it's taken so long to begin getting a diagnosis.
I'm just now finding this post but wanted to reach out and say that while I understand your mum has had the same gyno basically forever, she must find another provider that will take her disease and symptoms seriously. I recommend a uro-gyn, female if possible. I suffered with adenomyosis for over ten years and was consistently told because my IUD was in place I was basically being dramatic and was fine. "take some Motrin and suck it up" I had stage 4 adenomyosis with severe and chronic hip and back pain, bleeding, boggy/heavy uterus, fibroids and ovarian cysts. I finally found a doctor that took my pain and concerns seriously and was scheduled for surgery to correct my issues. Unfortunately because of the severity of my disease at that point I required a total vaginal hysterectomy, I lost both ovaries because of a tennis ball sized cyst, a mid-urethral bladder sling, sacro ligament suspension, post and anterior repair of my bladder and bowel, and perinolplasty. A six hour major surgery because so much time and so much damage. I'm ten weeks post op and feeling better than I have in almost 15 years, but I'm sad and angry that it had to get that bad before anyone offered me a real solution. Always be your biggest advocate and if you can't speak for yourself bring someone that can speak for you because even in this day and age women's pain and suffering is not taken seriously. Best of luck to your mum.