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Adeno & endo - considering a hysterectomy, only 29 Adeno & endo - considering a hysterectomy, only 29

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Unread 04-13-2021, 12:20 PM
Adeno & endo - considering a hysterectomy, only 29

Hi all, this is my first post. I have been back and forth on posting or joining this form as support groups and i dont get along well....I usually end up very anxious and depressed from reading all of the "bad things"/no light at the end of the tunnel.

However I really need some insight or input on my situation.

I am almost 29 years old, and have been fighting with my lady parts for what seems like my whole life now. I had painful cervical biopsies due to cancer cells when i was only 16. Then after YEARS of pain I was diagnosed with endo in 2017 after an endometrioma removal by my regular OBGYN.
Then in 2019 I had excision of my endo by 2 specialists.

Adenomyosis was suspected at my surgery based on the "look" of my uterus...and it was confirmed via ultrasound by another specialist back in Feb when not all my pain was relived after excision and I wanted a second opinion.
Thankfully I do not have severe symptoms yet and I do not have heavy/clotty periods...but I have alot of central aching pain, cramping throughout my cycle, lower back pain, and my uterus is retroverted-so sex isnt always the most pleasant.

Since my surgery in 2019, I have had alot of improvement...and I feel most of my endo pain is still gone. However im having issues with scar tissue, and I do need another surgery to clear that up.
But I am tired.
I know a hyst does not cure endo, but if adeno is typically a progressive disease (and a beast at that) is it wrong to just want the problem it out?
I just dont want to deal with it. I dont want to spend my 30's and 40's fighting this too... to keep trying things, and putting bandaids on things that ultimately will just end up with a hyst anyways.
I dont want kids, have never wanted to be a mother, so that is not my main concern here.
My main concern is will it be worth it?
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Unread 04-23-2021, 11:03 AM
Adeno & endo - considering a hysterectomy, only 29

Hi! I read you and I understand your frustration. In my case I did not have as many problems as yours but I understand the feeling. I started with what we thought were several fibroids, I had a risk pregnancy. Then the bleeding increased after the cesarean section and it was necessary to schedule my abdominal hysterectomy due to the large size of what we thought were fibroids but it turned out to be adenomyosis. The recovery has been very tiring but after 8 weeks of recovery from the hysterectomy I know it was the best decision. it would have been hell to keep dealing with such dangerous bleeds and discomfort.
If it is not in your plans to get pregnant then I do not see the point of continuing to deal with endometriosis and adenomyosis. You will also remove the danger of cervical uterine cancer.
Talk to your doctor and see what method is better for you.
Unread 04-23-2021, 07:07 PM
Re: Adeno & endo - considering a hysterectomy, only 29

Hi there,

I am so sorry you are going through this. I can relate because I had issues in the female department from the time I was 16. Was diagnosed with PCOS first but my issues got worse. Took a long time to figure out what the problem was (had docs tell me pain and issues were just in my head) and finally ended up getting diagnosed with Adeno. While young, I was miserable and wanted to get my life back and decided to get a hysterectomy. It was the best decision I could have made. All my pain was gone and for me, it was a quality of life issue. I was 32 when I had the hysterectomy (never had kids). I know there is no cure for end but I know how painful Adeno is! What have your doctors recommended?
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Unread 04-24-2021, 01:48 AM
Re: Adeno & endo - considering a hysterectomy, only 29

I'm also 29 and had a hysterectomy this January right before my 29th birthday. From my understanding a hysterectomy is the only cure for adenomyosis and I think that in itself is a good reason to get one. I got mine for PMDD & endometriosis, and I was begging for one, I would be begging for one if I was in your situation as well. Even though a hysterectomy is not the cure for endo, I knew stopping my period for good was necessary and I've been pain free since surgery. I was like you, I don't want kids, was tired of band aids and temporary fixes and I just wanted to shut my reproductive system down. So far for me it has been worth it. Surgery isn't easy and I've been having some weird side effects but its nothing compared to the pain I had before surgery. But ultimately no one knows your body better than you, so you have to figure out whats best, but if I were in your shoes I wouldn't hesitate to get the surgery. That's just my 2 cents!
Unread 04-24-2021, 09:59 AM
Re: Adeno & endo - considering a hysterectomy, only 29

I spent 10 years in pain every month that only got worse. About 5 years ago, I tried for a hysterectomy, but the doctor talked me out of it. I just had one this past February and it was so bad, my surgeon had to throw out her original plan and it took over 3 hours and I spent 2 nights in the hospital. I honestly thing my surgery would have been the usual outpatient surgery if I had gotten it when I originally requested it.

I'm not saying this to scare you, but to press that you shouldn't wait. If you are suffering with something that will only get worse with time, then get the surgery sooner than later. I only had Endo, but getting the uterus out has 1000% improved my quality of life.
Unread 05-11-2021, 05:17 PM
Adeno & endo - considering a hysterectomy, only 29

Hi everyone. Even though my response is delayed, I read all of your replies and thank you all so much for responding as giving your input and experience.

I had a video appointment with the more experienced surgeon on my excision case (I was originally seeing the surgeon who was trained by him and felt seeing the other surgeon for this was a better option for multiple reasons…)

He was amazing and said my symptoms were definitely adenomyosis and adhesions and he supports me in whatever decision I want to make and will give me all the information I need to make that decision.
Ultimately I did decide to move forward with scheduling a hysterectomy as he’s booking into spring 2022.
That way it’s on the books and if I change my mind I have all that time to do so.
Though at this point and from what I keep reading and hearing, I know it will be a huge relief

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