Does anyone have Adenomyosis?

[left210]

Does anyone have this condition? If so I would like to ask you some questions. Thanks.

 

[NEVERENOUGHWDW]

Does anyone have this condition? If so I would like to ask you some questions. Thanks.

I did for many years....It ended with a complete hysterectomy when I was 39. In any way I can help please let me know

 

[MiniGirl]

check out www.hystersisters.com

It is a wonderful resource with lots of women on there who have been through it.

I was dealing with something else, but I learned a lot about adenomyosis, too.

 

[focusondisney]

Found out I had it after my hysterectomy. Had the hyster at age 49. Best thing I ever did!

 

[ClarabelleCowFan]

My OB/Gyn strongly suspects I have it but the only way to confirm the diagnosis is with a hysterectomy and I haven't had that done yet.

I have suffered the symptoms for years. NO FUN.

 

[left210]

I have stage 4 endo and have had several surgeries for it but my last one was excision surgery and was a miracle. However at the time they discovered I have adenomyosis and said if I continued to have problems I may have to have a hysterectomy. That was 3 years ago. I do not have the bleeding because I take depo provera and do not have periods but when I did have periods they were typical of adenomyosis. I had a child 2 years ago and I joked that I still look pregnant because my abdomen is bloated most of the time. I also have this weird cramping sensation in my abdomen on the right side. I did not make the connection that it could be adeno until recently. I just thought I needed to lose weight but did find it odd that it was shaped like I was 6 months pregnant. Anyway, my main pain is during intercourse. It is so extreme that I do not want to do it. My local GYN just told me to drink a glass of wine and relax and blew me off but said if it didnt get better she would refer me to a pelvic pain specialist. So my search began on what could be causing this. All along I knew I had adenomyosis but I never made the connection. So I have now called the endo specialist that I went to for the last surgery to discuss it but havent heard back from him yet. So my question for those of you with adenomysosis - did you have the bloating like you are pregnant and the painful intercourse? If so did the bloating and pain go away after a hysterectomy? I dont want to go thru the surgery if it isnt going to relieve anything. I am 39 and not sure what to expect after a hysterectomy regarding how it affects your life and hormones and all. Any help is greatly appreciated.

 

[msjprincess]

I had adenomyosis, polyps, fibroids and extremely heavy bleeding. I had a hysterectomy at 40.

I was able to keep one ovary so I didn't need to take hormones afterward.

 

[Feralpeg]

I had adenomyosis and fibroids. I had a completem hysterectomy at age 50. It was the best thing I've ever done.

 

[left210]

For those of you who say a hyster was the best decision ever how has it changed your life?

 

[msjprincess]

For those of you who say a hyster was the best decision ever how has it changed your life?

For me the reason is no more horrible periods. I couldn't leave the house the first day or two. Plus not having to worry about BC is nice.

 

[Robindianne]

Does anyone have this condition? If so I would like to ask you some questions. Thanks.

Yes. It's funny I was just talking about it yesterday. I had such a need to connect with others in the same boat and it really helped me. You can pm me if you like and I'll help any way I can.

 

[Feralpeg]

For those of you who say a hyster was the best decision ever how has it changed your life?

Prior to my hysterectomy, I was in pain three out of four weeks a month. It was bad enough that I lived on pain killers. In the process, I messed up my stomach pretty bad.

Toward the end, I had my period non-stop. It was so heavy that I'd have to get up multiple times a night to change pads. I would be sitting at my desk and feel it gush. By the time I'd get to the restroom at work, I'd be soaked through. I couldn't go anywhere or do anything.

After the surgery, the pain was gone. Since I had breast cancer at an early age, they recommend that I don't take any form of hormone replacement. I do experience hot flashes, but I'll take them any day over the pain I was in prior to my surgery. I felt like my surgery gave me a new lease on life.

 

[NEVERENOUGHWDW]

I have stage 4 endo and have had several surgeries for it but my last one was excision surgery and was a miracle. However at the time they discovered I have adenomyosis and said if I continued to have problems I may have to have a hysterectomy. That was 3 years ago. I do not have the bleeding because I take depo provera and do not have periods but when I did have periods they were typical of adenomyosis. I had a child 2 years ago and I joked that I still look pregnant because my abdomen is bloated most of the time. I also have this weird cramping sensation in my abdomen on the right side. I did not make the connection that it could be adeno until recently. I just thought I needed to lose weight but did find it odd that it was shaped like I was 6 months pregnant. Anyway, my main pain is during intercourse. It is so extreme that I do not want to do it. My local GYN just told me to drink a glass of wine and relax and blew me off but said if it didnt get better she would refer me to a pelvic pain specialist. So my search began on what could be causing this. All along I knew I had adenomyosis but I never made the connection. So I have now called the endo specialist that I went to for the last surgery to discuss it but havent heard back from him yet. So my question for those of you with adenomysosis - did you have the bloating like you are pregnant and the painful intercourse? If so did the bloating and pain go away after a hysterectomy? I dont want to go thru the surgery if it isnt going to relieve anything. I am 39 and not sure what to expect after a hysterectomy regarding how it affects your life and hormones and all. Any help is greatly appreciated.

After my hysterectomy (at 39) both painful intercourse & bloating disappeared.
The pain from my endo & abdemyosis had me in bed at least 8-10 days per month. I was on a series of meds including Fentynl which they use for end stage cancer patients & I would still pass out from the pain. The last 3 years I had to have someone with me round the clock during that week.

I've had many issues with menopause. Part of it due to the fact that I cannot take replacement therapy because I've had blood clots in my leg & lungs. PM me if I can answer anything for you.

~wanted to add I also had my ovaries removed.

 

[ElizK]

For those of you who say a hyster was the best decision ever how has it changed your life?

I had a hysterectomy last year (endometriosis and adenomyosis). I kind of traded one set of problems for a different set of problems.

My remaining ovary doesn't produce enough hormone, so I spent months having horrible hot flashes. Truly awful. Had to start taking HRT. I have not slept well since the day of my surgery. Literally. And I don't even want to talk about the weight I've gained (my thyroid levels got wonky after my surgery... not sure which contributed to the weight gain, or they worked together). So, while I am THRILLED to be done with the pain, etc, now I'm dealing with other issues. Not sure if I'd make the same decision knowing what I know now. Not sure I wouldn't, either.

Have you talked to your doctor about an ablation?

eta: I was 41 when I had the surgery.

 

[focusondisney]

For those of you who say a hyster was the best decision ever how has it changed your life?

Hi! I had always had very heavy periods, but the last several years before my hyster, it was ridiculous. Periods every 2- 3 weeks, lasting up to 10-12 days. 3-4 days so heavy I needed to always be near a bathroom. I would actually be raw down below from having to change pads & tampons so often ( Yes, I would need to use super plus of both products at the same time). Awake several times at night to change. Always tired from anemia & sleep interuption.

I guess I did have lots of cramps, but that was so normal to me. I do have a pretty high pain threshold, so that was not a big problem for me.

I was 49 when I had the hyster & already having peri menopause for several years. I did not have my ovaries removed & have continued with hot flashes, etc as I normaly would have. Luckily, herbal products have helped me wonderfully with that.

So for me, having the hyster gave me back my life! My life is no longer focused around my periods. I no longer need to carry packages of "supplies", & make sure I will be near a bathroom whever I go. I am in a better mood all the time from sleeping better & not being anemic anymore. I have less "discomfort". And while no one has mentioned it, I will. My "romantic" life with my DH better than ever. No discomfort, no birth control to worry about & no 2 week periods to interfere with it.

Sorry, this is probably all TMI! But you did ask! Good luck with your decision.

 

[tlbwriter]

My OB/Gyn strongly suspects I have it but the only way to confirm the diagnosis is with a hysterectomy

Really? I had an MRI to determine whether I had adenomyosis or fibroids.

 

[beachlover9395]

I had cervical dysplasia, 4 small fibroids, and some endometriosis. Path report showed I also had adenomyosis, which was not surprising, considering I basically bled for three weeks out of the month and had one week off. It was horrible. I had a hysterectomy (ovaries remain) back when I was 34 and it was one of the best surgeries I ever had done that impacted my life for the better - the other was a tonsillectomy at the age of 19. It also got rid of most of my horrible PMS!

But here's irony for you - several years after the hysterectomy, I was diagnosed with PCOS (polycystic ovarian syndrome) and for several years I've been on Yasmin (generic is now Ocella). I don't even have a uterus but take birth control pills. Which is why many women take birth control pills for reasons other than contraceptive purposes!!!

 

[moet7]

HI
For those of you who have adenomyosis. Did you delivery by C-section?

I was told 10 years ago that I had adenomyosis. I went in for my regular exam and the doctor said that my uterus was "enlarged". She asked me about my periods and I told her that they had started to get heavier.

She said I either had fibrods or adenomyosis.....she sent me for an u/s and that doctor told me it was adenomyosis.

I was told I could go on hormones to help with the bleeding, but I have a blood clotting disorder so that's a no go.

The thing that I find strange is that I don't really have any of the issues that all of you are talking about.

I have heavy periods........but not as bad as the ones you are all talking about......in fact they have gotten shorter in the last few years. I have mild discomfort.......and sometimes no discomfort at all......the only thing that I do have that is driving me crazy is the bloating of my stomach.

I have had two u/s since I was told that I have this and the doctor just says that my uterus is enlarged and elongated.

So back to my question.......I was told that woman who have had "trama" to the uterus are more likely to get this........I have had 5 D & C's and 4 c-sections. Anyone else hear this?

 

[ZachnElli]

I had a doctor tell me in 2004 that I probably had adenomyosis. I've had 7 miscarriages, 3 D&C's and 1 D&E, that is my trama. I had 2 children before the miscarriages, but not c-sections. Miscarriage #4 was truly horrendous physically. I've not done anything about it. I was not, and am still not, ready for a hysterectomy. My doctor at the time said there was only 2 ways to diagnose it, MRI which is expensive and insurance doesn't like to pay for it because when diagnosed, the "cure" is a hysterectomy (this is what he told me) which is the other way to diagnose it. He also said the MRI doesn't always pick it up.