Devastated! Endometriosis but no adenomyosis (hysterectomy)

[Marma2010]

I had a total hystetecomy on 26 May 2016. They also took the ovaries, tubes etc. I had a diagnosis or both endometriosis and adenomyosis and have had 3 laparoscopies prior to the hysterectomy to remove the endo but it kept coming back. I have just received the histology report and although lots of endo was found, there was no adenomyosis. They also said one of my ovaries was normal. I feel devastated by this and duped into having this serious surgery and having so much removed. I only went ahead as I was told it was the only way to cure adenomysis and endo can still return. Obviously there is no going back and now I have years of hrt ahead (I am 41).

[Poppybead]

I am so sorry and my heart goes out to you. I had a similar prognosis but not ready for the big Hugs.

[Hidden]

Hi, I had hysterectomy April 2016 as like you I was told I had adenomyosis. When the histology came back it said I had no adenomyosis - I'm gutted I had this surgery I'm only 35 😭

My pelvic pain is still present in fact I feel worse than I did before the hysterectomy - I'm currently taking cocadamo, amitriptyline and nerve blocker to manage my pain.

Do you still have pain? Hope you don't mind me asking, but where did you have your hysterectomy done?

Hope you are ok xxx

[mihaelad in reply to Hidden]

I cannot believe how angry and disappointed you must feel.. And how much pain.. to decide to get a hysterectomy at 35... And no relief.. I am really sorry for what you're going through.

What did the doctor say about your uterus? If it wasn't adeno, what was it? Musthave been looking abnormal and bulky before the surgery if they suspected adenomyosis and felt the only option at 35 is to remove it... Did they find something else at least?

I am in a similar situation and afraid to do the big surgery because of wrong diagnosis suspicion.. Please let me know.

Thank you and I hope you 'll feel better.

[Hidden]

Hi!

After decades of worsening pelvic pain with several tests that (apparently) showed nothing wrong with me at all, I had a total hysterectomy with both ovaries and tubes removed. They were shocked to discover Stage 4 endo with severe adhesions (womb, left tube and ovary were stuck to my left ureter, sigmoid colon and left pelvic wall). Histology showed adenomyosis and an endometrioma in my left ovary (this was dismissed by senior gynae consultant as a 'functional' cyst). My right ovary was normal and yes I am disturbed by the fact that it was removed. Whilst I am on oestrogel I am sure that my right ovary would have come in handy to produce some androgens. I am 51 however so am luckier than younger women in my situation.

What I have learned from this is that women with severe pelvic pain must keep pushing for a diagnosis (preferably in a BSGE centre) and not be fobbed off with increasing doses of strong painkillers and told to 'soldier on' - yes that was said to me by a female GP!!!

I have hardly any pain now. I am being referred to a BSGE centre in case the residual endo becomes active again and to discuss whether I need further adhesiolysis.

I hope you begin to feel better soon and find a way through this.

Julie.

[Marcia71 in reply to Hidden]

I too was told to "learn to live with my pain" by a female GP - I used that as reason for referal to BSGE clinic - my reasoning being that they have a pain specialist and if I need to get used to endo pain then I want to see endo specialist! It worked as I got referral and they are already thinking surgery to help pain and were shocked, though not surprised, I'd been told to just get used to it.

[Marma2010 in reply to Hidden]

i had originally asked the surgeon to keep one ovary. However, just before the surgery he told me that he thought he wouldn't be able to save either of them - if he unstuck then they would just stick somewhere else. So I said to go ahead. However, on hindsight I feel he may have just felt it was easier for him to whip it all out!!

[Marcia71]

Sorry to hear your troubles and hope you are able to come to terms with all that's happened

I had my TAH and BSO in Feb 2015. How was your hysterectomy done? Mine was by incision which BSGE clinic now tell me wasn't the best way for someone with endo as it increases likelihood of adhesions after surgery which can cause pain too. Clinic have also taken me off all HRT as it seems for me that it makes endo regrow. I am 45 so realise this is a different option for me but I find Menopace and calcium tablets and acupuncture all help me with the likely menopause effects.

I've already had one laparoscopy to remove remaining endo and adhesions but as I'm still in lots of pain I'm expecting another surgery sometime soon - this time by the BSGE clinic as I didn't know about them until recently (when I joined this forum!)

Good luck and lots of hugs.

BTW if you want more info on hysterectomy I'd suggest looking st hysterectomy associations website as v useful.

[Marma2010 in reply to Marcia71]

Many thanks for the links. I had it done laparoscopically

[Kirstyjane]

Apparently adenomyosis is quite hard to detect even with a sample of your uterus going for histology.

It is quite common for adenomyosis to be missed even at that stage and does not mean that you didn't have it. There is loads of really useful and informative info on the adenomyosis support group on Facebook.

[Marma2010 in reply to Kirstyjane]

Thank you - that's really helpful. I had all the symptoms of adenomyosis so it's hard to believe I didn't have it!

[mihaelad]

Hello, I am so sorry for your troubles. I know how it feels to leave in pain and you finally make the big hysterectomy decision, it's for nothing :((((

I am actually sitting in hospital today after last night miscarriage at 11 weeks. I 've been diagnosed with adenomyosis in 2013 and the doctors told me it's okay to try to conceive because adeno will subside from the pregnancy hormones. However, I lost two pregnancies and I felt a lot of pain during pregnancy.

The reason I write to you is because I believe I have wrong diagnosis also.

Please tell me what the doctor told you about the phatalogy report? If it wasn't adeno.. What was it? Your uterus was probably not normal tissue if they suspected adenomyosis.. Must have been enlarged and bulky? And how was your pain? Did you get very aggressive pain after period? From the time period ended until the ovulation?

Thank you very much and I hope you 'll feel better.

[Marma2010]

Hi all, thank you for your words of support. It is much appreciated. I'm sorry to hear other ladies have had the same thing happen. In answer to your questions my uterus was found to be 'bulky' in a laparoscopy back in 2009. I tried lots of other things including mirena, the pill, fake menopause (can't remember name) but nothing worked. I just think that the consultants give up on you when you've tried a few things and it hasn't worked and then the default position is hysterectomy. After my last lap where he tried to remove as much endo as possible, he wrote on my notes "adenomyosis - high risk of needing hysterectomy".

[Nicole30]

I really feel for you, I have both and have to have a hysterectomy later on in the year so I can understand why you are feeling devastated as I’m still trying to get my head round it too xx💛 stay strong and hope you can move forward