General question

[Adeno2020]

Hi everyone hope everyone’s doing fine!

Quick question really. I had a lap in July which shown adenomyosis but no endometriosis. Since then I have been admitted to hospital with right sided lower abdo pain. As I still have appendix they’re never sure whether it’s appendix or gynae related. So I had my scan on Monday (ultrasound) and the sonography was SO helpful. She’s basically said I need to demand a second opinion as the scan shows soft tissue signs for ENDOMETRIOSIS she said my ovaries are too close to my womb and they actually touch and rub against it and apparently that’s a massive sign of endometriosis. She also said if left they can become attached? Has anyone had this? How do I go about demanding second opinion? Would they do another surgery?

Will explain it being missed as the excruciating pains I get after sex is intense and can go in for days after! My legs are numb now a few days after my cycle and my bowel pains and bleeding is ridiculous! Also during my last lap they removed scar tissue from the bowel but apparently wasn’t endo?

Please I need advise at a lose end

[TennisAM]

Hello if you are in the UK, each area works slightly differently.

Were you under the care of a bsge endometriosis specialist? It sounds like you need a multi disciplinary team (gynae, colorectal surgeon).

I would find out who the clinical director is for the hospital and send them an email. Other people have had success with this method. If they have a unique name it's normally easy to guess the email layout. Jdoe@ NHS . Net, janedoe with the same Jane.doe etc etc. Do some test emails and see if it bounces. The other option is to go to PALS at the trust so they can speed things up. You can get your own trust to look into it again *and* get a second opinion at a different trust. To get a second opinion at another trust your GP can refer you to somewhere else and say it's for a second opinion. I would pick your consultant so that you know who you're getting is good. Ask around and check reviews (take these with a punch of salt as some consultants insist on the negative ones being taken down). Make sure the GP does an urgent 2 week referral.

I've had a stuck ovary and it's very painful. Given you have painful sex you might have recto vaginal involvement so it's extremely important that there's a experienced colorectal surgeon at your next surgery.

I should say the advice in paragraph one works in England but not 100% sure about referrals in the other home nations

Let us know how it goes. Sorry you're going through all this. I've been in a similar situation and I know how painful it's been. x

[Adeno2020 in reply to TennisAM]

Thankyou for reaching out! I’m in Birmingham and too my knowledge it was a specialist hospital with a specialist surgeon. His assistant even said if he can’t find it it’s not there! But that doesn’t explain all these other issues AND the scar tissue found on bowel. Yes so painful and just suddenly comes on!

[TennisAM in reply to Adeno2020]

I believe there are good choices in Birmingham so conserve your energy and fight. You've got this! His secretary sounds like a muppet. I had a top specialist for my first surgery and he missed 11mm of endo. Probably didn't look properly. Everyone is human, everyone makes mistakes. Good luck xx

[Adeno2020 in reply to TennisAM]

That’s very true you’ve given me reassurance. Do you know the procedure or desired time they’ll do a lap? Like how long do they like to leave it. Xx

[TennisAM in reply to Adeno2020]

It all depends on what youve had done but my Gynaecologist said 6 weeks. 1 week for each layer to heal. Initially I was meant to have a second (simple) procedure. I was told it would happen 6 weeks later. I wouldn't allow them to drag it out given it looks like he could be negligent. If you use the word they may speed things up. Could get them to do it on the NHS at your local private hospital. Still very important the bowel surgeon is there. If you've not been referred to a bowel specialist they could refer you and do it on their list. I contacted a bowel specialist and they helped me by doing it as an extra on their nhs list. The only reason I got an op or I'd still be waiting. I'd try all the different avenues xx

[Adeno2020 in reply to TennisAM]

I was referred to bowel specialist 2 years ago! And still waiting my first appointment I’m defo going to push it thanks xx

[TennisAM in reply to Adeno2020]

Wow the referral must have got lost. I've been referred to a colorectal surgeon and a Gastroenterologist during the pandemic and both gave me an appt within 2 months. Worth chasing that up.

[Adeno2020 in reply to TennisAM]

I will, been referred twice now so it is taking a long time!

[Nikkky]

Hi, it’s good that the person who did your scan was so thorough and informed you of her findings in detail. Is she putting her findings and opinion in writing to your g.p or consultant? I would see this as a positive as it backs up your case for further exploration and treatment. Your g.p should refer you to an endometriosis specialist based on your scan result. As we all know only too well, endo does cause adhesions, scar tissue and therefore pain. How else can they explain the scar tissue that was found on your bowel? It’s so frustrating for you but I think you’ll be able to make some progress now. Fingers crossed.

[Adeno2020 in reply to Nikkky]

Thankyou so much, yes she said she was putting it in the report. Honnestly so thankful for her. She was only meant to be scanning my appendix and kidneys! Bless her. I’m not one to complain nor push for things. But I’m going to give my gp a call Thankyou

[Nikkky in reply to Adeno2020]

It just takes that one health professional who actually cares and genuinely wants to help doesn’t it? It restores our faith and I wish more were like that. Out of all of the g.p’s, gynaecologists etc I’ve seen over the years only one g.p and one gynaecologist actually made a difference by listening and taking the right course of action. The others either dismissed me, patronised me, were downright rude, or did do a laparoscopy and provide treatment but then dismissed me when pain and symptoms returned. The pain and symptoms are very real, it’s just so exhausting and frustrating getting someone to believe us, be honest with us and do the right thing. A private MRI scan is most likely my next move, but it’s just finding the energy and strength! I wish you luck and please keep me posted on your progress x

[Adeno2020 in reply to Nikkky]

My partner keeps telling me to go private but I feel like why should we have too! Wish you all the best and thanks again x