No endo found

[Ccn2018]

Dec 2021 I had endo removed between my bladder and abdominal wall, dense bowel adhesions noted. Mirena inserted.

May 2022 the pain started again, lower left side and down my leg. All around mid and end cycle. Referred back to gynae.

Since tried the progesterone only pill on top, had a normal mri, bleeding rectally before my period, awful bowel problems and pain before my period. Was started on Zoladex for 6 months and added to the list for a total hysterectomy.

Fast forward to yesterday, I couldn’t wait anymore on the nhs, I paid to have a private hysterectomy. The consultant found no endometriosis and said everything looked healthy! So I fear I’ve had my womb, tubes and cervix removed for no reason and it’s not going to have helped my pain.

Where do I go from here? Colonoscopy was normal despite the fact that I bleed from my bottom! Is it just that this consultant didn’t see it? Do I go to a BSGE centre?

I’m so emotional about having no womb at 34 and in immense pain, seemingly for nothing 😭 this absolutely has got to be endometriosis with how it happens at the same time every damn month!!! Help!

[Kieraface]

I am so so sorry to hear that you’ve had such an awful experience. Was the private surgeon not bsge? It may still be worthwhile contacting a bsge consultant as the endo may have been on the outside of your bowel and permeated it. It maybe worth getting them to check: I hope the hysterectomy helps: just remember if you’ve only just had it done you may not feel the effects until you recover. Give it a few weeks and see how the pain is after recovery. Did you have keyhole removal? xx

[Ccn2018 in reply to Kieraface]

Thank you for your reply. The surgeon that undertook my surgery isn’t an endo specialist and is just general gynae. I had a vaginal hysterectomy with four abdominal cuts. X

[Kieraface in reply to Ccn2018]

If I were you I’d still look to contact an endo specialist then. It maybe that the hysterectomy didn’t take all the endo as endo can grow outside of the reproductive organs. I’m so sorry you’re still in pain feel better soon xx

[Lovethemoon]

Firstly I’m so sorry to hear what you are going through. Being the same age as you and facing a similar situation, I’ll be keen to see some replies on this post. My first laparoscopy they removed small amounts of endosalpingiosis. And then my second was normal! Have started on zoladex too which I’m having an awful time with. And now I don’t know what the next answer is. It’s such a shame there are so many women suffering 😢

[Ccn2018 in reply to Lovethemoon]

I found my pain worse on Zoladex! Wonder if that’s why they didn’t find any…?! It’s certainly there, it must be but they missed it!

[Sasha_S]

I'm so very sorry. I've had 4 laparoscopic surgeries to remove Endo. The first 3 found stage 4 endometriosis. The last surgery there was no Endo and only adhesions removed. I was so upset because I had all the same symptoms I'd had previously. After I recovered from surgery, I actually felt so much better. My pain has decreased drastically. My surgeon said that perhaps I had microscopic Endo that she wasn't able to see. Please don't panic. You might feel relief after you've healed. You may have had Endo that the surgeon didn't see. I really hope that you heal well. My heart goes out to you. I'm hoping that you'll feel a lot better after you recover.

All the best xx

[Prettythings1]

I am so sorry you are going through this xx

[Cocoacupid]

hun I reckon it’s in your bowel hun like me my bowel is extremely bad but I may well have a hysterectomy aswell if it’s bad am nearly four years older than yourself xx hopefully though the hysterectomy will make the pain less but if it’s in your bowel hun you would have a clear colonoscopy like I had but the endo was found in my lap but just had an mri as to see how deep it is and to what extent. I’m still waiting on a letter from my consultant xx

[Ccn2018 in reply to Cocoacupid]

My mri is as okay, shows my bowel is closely applied but no evidence of deep infiltration. I have all symptoms of bowel wall endo so don’t understand why they didn’t see any on Friday. They really went to town on me, they’ve looked at everything, my notes are very detailed x

[Cocoacupid]

aww sweetheart mine is deep infiltrated but you could still maybe have mild endo on the bowel hun xxx

[Cocoacupid]

don’t give up hun xxx just keep fighting sweetheart . Xx

[Ccn2018 in reply to Cocoacupid]

I honestly have no fight left. I can’t undergo any more surgery. It’s the third time I’ve had surgery and the third time I’ve had a major bleed in theatre. It’s so risky and I have young children at home. Just don’t know what to do anymore!

[Cocoacupid]

aww bless you hun so sorry for your troubles hun xx take good care of yourself xx