Second opinion

[MyStar86]

Hi,

I was diagnosed last year with endometriosis by a non endo specialist where he laser/burnt off the endo covering my right pelvis and ligaments but left the deep infiltrated endo on the sigmoid colon, pounch of Douglas and rectum. The rectovaginal endo was then operated on by an endo specialist and corectal surgeon however they did not look around and just treated this area. I was happy with their surgery by accredited endo centre etc but I am still left in agony upper right quadrant mainly diaphragm area I am unable to function constantly having to lay flat to lift my diaphragm up away from things. I went back to my gyne non endo specialist and I had a total hysterectomy everything removed but the upper right quadrant pain continues. Do you think I could get a referral to an endo specialist for a second opinion to do a diagnostic lap and fully look in that area as I am concerned I have been through so much via a non endo specialist and still suffering with my main problem and it’s so bad I can’t function?

has anyone else had this experience and got a second lap done even after multiple endo surgeries as I was put on oestrogen only hrt and my symptoms got so much worse even the lower bowel pain back so I fear my worst nightmare is happening and I just want someone to check before it gets any worse. I am now taking progesterone as well!!!!

help please xx

[MyStar86]

I’m 35, have osteoporosis and all of my treatment for endo has been done via the private sector xx

[Avourneen]

I'm so sorry you have been through all of this. It's so typical we endo sufferers go to the first gynae we are pointed in the direction of and they frequently don't offer the right treatment. I think you have to be very careful with any HRT as it often seems to make endo grow profusely. I think you shuld go to a second specialist but diaphragmic endo is very hard to diagnose, I have been told by one "top endo specialist" that diapraghmic endo wont shoe up at all on MRI and by another that it will. But having asked a third specialcist the answer seems tobe it will only show up if it is very thick, shaving a VATs procedure is the only way to be sure. That's quite a big deal and very very specialised only a few specialists will do it. It might be adhseions rather than diaphramic endo and that might be tricky to deal with. But I think what has become clear to me is that even the verybest surgeons dealing with endo have quite different opinions on how to deal with it, I would search out who does VATS and deals with diaphragmic endo and contact a couple of them for their opinions before doing anything else.

It's very difficult and quite frankly scary when the endo spreads so far and I really hope you can get some useful help from some specialists. Good luck xxx

[MyStar86 in reply to Avourneen]

thank you so much I’m very scared and just want to cry all the time I’m so lost. I will seek some pain management as well. I have been recommended a diaphragmatic endo specialist in London I will send you a message to see what you think as I’m lost and very scared. I’ve never felt so much pain it hurts to breathe 😔. I want someone to take this away as since the hysterectomy I have pain all the time vs during my period etc. i can’t tolerance most pain meds so I feel trapped in a broken body xx

[Marcia71]

I’m glad you’ve added in progesterone as an endo sufferer you do need combined hrt - both oestrogen and progesterone continuously.

I had worse pain after my hyster as was done by general Gynae as I didn’t know enough about endo at the time. He didn’t remove endo from my uterosacral ligaments and it got sewn into vaginal vault and after fighting to be heard I finally had surgery at a bsge centre after 4 years and had endo excised and it really helped my pain.

I don’t have enough experience on diaphragmatic endo but do know it’s more common than specialists would have us believe. I get pain in that area but I’m sure it’s due to adhesions as two of my surgeries had a port quite high up to get instruments in so I have a lot of pain under my ribs.

Whilst your gp may not know it they can refer you to a bsge specialist centre for a second opinion as you’ve e had a hysterectomy and not had relief.

[MyStar86]

thank you so much and whilst I hate to know you have suffered too from the same thing it does make me not feel alone as I feel like I’m going mad I’m in so much pain I can hardly think. I had so much hope for the surgery and to be worse off is devastating.

I have had a recommendation of a diaphragmatic endo specialist at a bsge specialist centre so I will be asking my gp to do the referral and I’m hoping he can help. My port holes are well lower down in my pelvis and the battering is my poor belly button but the crazy pain is my diaphragm and upper right quadrant which is what I sort help for in the first place but non of the surgeries were anywhere near my pain apart from when I had gallbladder surgery in 2010 and an epigastric hernia removed in 2017 but this pain started in 2020 when all the endo issues kicked off.

Thank you for taking the time to reply it’s just heartbreaking I feel so lost as I don’t tolerate pain meds well or ibuprofen style ones due to my gastric issues so I am trying to survive on paracetamol and diazepam in a tiny dose for the spasms. I just feel scared and alone I just wish it would all go away or at least be at a level I could live my life not be in bed most ot the day. I do force two walks a day for my mental health and bones but otherwise I’m just in agony xx

[BloomingMarvellous]

Always worth asking for another opinion. Adhesions, ligament compromising in the pelvis are intricately linked to the diaphragm function which frequently is the right side.

Worth listening to Leah Brug’s podcast ( Instagram with link to her site ) with Dr Angie Muller for a specialist explanation of the relationship on the anatomy and possible role of physio with this.

[BloomingMarvellous]

I had excruciating right quadrant pain and did the specialist physio, supplements to improve liver and gall bladder function which can be pretty compromised by endo. ( I use milk thistle and Chorella powder and castor oil packs ) Pain relief itself can cause overload too used long term . Drinking 3 litres of water daily for me has also reduced the pelvic pressure overall so there’s less for my system to have to cope with.