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Endometriosis UK
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Urgent- can anyone please help? Surgeon advice

I’m a long time sufferer of severe RV Endo & have tried to give advice to fellow sufferers whenever I feel I can be of help on this forum...I need some of you special ladies’ help now if possible.

Had Total Peritoneal Excision by a well known surgeon (Mr T) in Yorkshire in Nov’15, he finally relieved me of excruciating pain left hand side after other surgeons failed dismally. Now in agony right hand side, adhesions & possible cyst implications. Can anyone PM me a UK surgeon who does temporary ovarian suspension after endometriosis excision? Have found this to be so much more effective in helping ovaries not to stick again post surgery. Have had 3 days of severe pain & on Tramadol & anti-inflammatories now, not even touching sides. Any advice would be greatly appreciated as I can’t even sleep in so much pain. Thank you for reading my SOS & to anyone who can maybe help xx

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Good morning hun,

Hope you managed to sleep last night,

How you doing today

💗🤗😘

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Morning love, slept much better thanks. Amazing what some decent sleep can do! Still feeling quite drugged as was on a lot of painkillers throughout yesterday, the pain and nerve pain is lessening thank god as I couldn’t take much more. Feel exhausted but glad to finally have had some sleep as not had any for months. Fingers crossed for a calmer day ahead.

Yes Tugs is amazing isn’t she, to keep getting back up again is a real testament to the strength she has, as do a lot of us, I just think we often don’t recognise it sometimes how much we do cope with!

Thanks for writing, hope all’s ok with you today 😘

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Awww glad to know you got some rest, yes it is amazing what some rest can do although that dreaded fatigue does take over sometimes. Glad your pain is lessening hun hope it continues to lessen, 💗

Your right amazing strength she and all of us have we just don't realise as we're blinded by all the headache we have it's like our nature to be negative about ourselves. 💗

Hope your day is much better hun big hugs lots of love 💗🤗😘

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Morning love, thanks so much for texting again, very kind of you, you were a total star last night. Finally managed to get to sleep about 3’ish, took too many painkillers but at least they finally knocked me out, but am feeling pretty drugged and dozy this morning. Pain in my right side subsided a bit...for now. Whatever’s happening on that side triggers the worst nerve pain all over my right thigh, just couldn’t get on top of the pain last few nights at all. Going to order some serrapeptase today, thanks so much for the advice on that, I’ll try anything.

Can’t thank you enough for answering my cry for help last night, it’s a lonely place being in pain throughout the night isn’t it. To have seen your response pop in moments after posting did the world of good just knowing someone was there, thanks so much for texting, I really appreciated it. You do such a fantastic job at supporting people on this forum. That’s one thing I’ve noticed across the board that the people are the kindest, most compassionate empathetic people you’d hope to find, yet some cruel twist of fate makes us all suffer so much, I just don’t understand it.

Just off for a hot shower now to try and liven up a bit but another day I’m going to have to write off I think. Desperately wanting to try and do another transfer soon, we did the first last Aug & I got pregnant, second didn’t work then I started getting really bad heart palps and chest pain & been put on beta blockers, I’ve always got v low blood pressure so while the pills are calming my heart they’re making me v lightheaded unfortunately. TheECG showed one of the chambers in my heart is enlarged so got to have further investigation but they think heart palps were caused from huge amounts of excess progesterone. Last cycle I had a literal phase of nearly 40 plus days & consultaht is perplexed with what’s going on. Checked hormones and nothing menopause-related but my period wouldn’t start and progesterone was that of a level of a second trimester pregnancy. All v odd, think my body is just screaming that it’s had enough now. We’ve still got 4 frozen embies from donor cycle and desperate to try another transfer but my body feels too battered. I’m 44 and just feel time has run out now I’m so exhausted.

I’ve not had any replies to my post so far, my surgeon retired last year so may email him to get some advice.

In the meantime thank you again. I’ll get on the forum today and read up on your latest posts to see how you’re getting on, I’ve just not been well enough recently to be aware of what’s going on. I managed to get a note to tugsgirl as she’s having such a hard time, but have been remiss at checking in.

Will be thinking of you tomorrow, keep me posted how you get on as I can imagine how anxious you must be. Have a good day and thanks again xx

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I'm heart 💔for tugs seriously it's awful.

Bless ya. Glad you've managed to get some sleep I was worried about you last night, 🤗 no need to thank me hun it's what we're here for, keep each other going in tough times.

Hopefully you can get on top of this and try for your transfer soon with much better out comes hun I really hope so, so maybe you don't need progesterone or just a low dose of it?

I'm not surprised how exhausted you are you've been through loads them surgeries you've had will take it out of you also. Have you ever tried homeapathy?

Don't worry about not being able to get back to others and trying to contact us all we know how tough it is atv times and that you do when you can, just relax and don't expect too much of yourself. 💗

I'll keep you posted I'll message you tomoz you have a good day too hun. Remember just relax you owe it to yourself

💗🤗😘

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Yes I really feel for Tugs too she so deserves a break now my heart breaks for her. I think sometimes u lose sight of your own pain and think how on earth do others cope but then when people know what I’ve been through, they all say they couldn’t put up with what I have, I think with Endo you suffer for so long you just get used to it, it’s impact on your life and it becomes your new normal doesn’t it. Such a horrible illness.

I didn’t take extra progesterone on my first transfer, got pregnant but miscarried at just over 6wks so consultant suggested extra progesterone next time. Did a second transfer with the extra progesterone & that’s when all the excess progesterone started and my period wouldn’t start & the progesterone levels just kept on climbing, so really not sure what is happening.

Tried herbs, reflexology, acupuncture you make it I’ve tried it! The one thing I always had going for me with fertility was regular periods and always ovulating same day every month like clockwork but since miscarriage that’s all gone to pot now too. I wanted to do everything to avoid a transfer in a medicated cycle as the oestrogen flares my Endo up but looks like that’s the only way for the next transfer to happen due to my cycle having gone haywire.

Need to just give my body time and give myself some TLC but never been v good at that!!

Just tucking into a big break to try and soak up the drugs as I’m away with the fairies right now! 🤪

Will be in touch tmw, thanks so much for ur support xxx

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Tugs has come back fighting bless her, im so happy that she hasn't given up, I knew she wouldn't 💗

Yes you do loose sight of your own pain especially when you read these painful stories of others on here.

I'm sorry you've had such headache since your miscarriage. Big hugs hun I hope it gets sorted so you don't have to have a medicated transfer 🙏

You just need to really try have some tlc and be good to yourself hun. How are you feeling now hun hope your feeling much better.

Hope you manage to have some sleep too

💗🤗😘

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So sorry to hear you are in so much pain :( you've really been through the mill with it all xxx

My surgeon was good but I've no idea if he does such a thing so you're probably best off getting a recommendation off your old consultant.

Just wanted to let you know that I'm thinking of you xxx

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Thanks for your lovely message. You know more than most what it’s like at the really sharp end of this awful illness, I really appreciate you taking time to write.

I don’t think many surgeons do the ovarian suspension after excision surgery, it is shown to really reduce the risk of further ‘sticking’ of the ovaries to the raw excised areas so I don’t know why more surgeons don’t practice it.

Hoping someone may have had experience of it but no one got in touch so far, my surgeon retired late last year but did say I could contact him so will try and get hold of him. Haven’t found anyone nearly as dedicated as him unfortunately & I’ve had surgeries worldwide.

Thanks so much for your message though, really appreciated hearing from you.

I’ve been off the forum recently as a lot of issues stacking up which have been relentless & all consuming. I’ll have to catch up on your latest posts, how’s everything going with you? How are u feeling at the mo? Hope you’re ok.

Thanks again x x

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Yes, that's what I'd read, fingers crossed you can get a good recommendation from him xx

Me I'm gaining weight thankfully and now on my second attempt at a phased rtw, but having to go part time temporarily on the recommendation of my pain physio as the combination of the meningitis and endo seems to have caused cfs and possibly mild fibro symptoms.

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Thanks love. I’ll PM later re some of your latest posts/current situation, I’ve been very remiss at reading the forum lately as I’ve been having a lot of struggles combined with all the knock on fertility implications too but I’ll have a good read over your posts (I’ve had a few similar experiences with CFS/fibro for 10 yrs prior to Endo being diagnosed) I can sympathise hugely with how your life has changed. I’ve become one of those watching from the outside looking in at ‘normal’ people’s lives/careers etc and I know how painful that can be. Will be back in touch, hope you can rest up over the weekend xxx

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I think its standard practice to offer ovarian suppression after endo excision. I dont think you would find an endo gynae specialist who wouldnt offer. I hope that' reassuring for you x

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Thanks for your message but I was actually referring to ovarian suspension not suppression. Ovarian suspension involves literally pulling the ovaries towards the abdominal wall at the end of excision surgery, suspending them by a stitch which then runs through your abdominal wall to the outside of your tummy and the stitch is pulled and held by a button on the outside of your tummy. It is quite unusual to do but actually very effective. After about 10-14 days post surgery the stitch/buttons on the outside are cut off & removed which causes the ovary/ovaries to fall back into their natural position once the excised areas are less raw. Research has shown this tends to avoid the ovary ‘sticking’ to the raw excised areas which can cause further problems at a later date.

Not many surgeons are proficient in this as it requires a very high level of surgical skill which is why I was asking if anyone had had it, it’s certainly not done as standard in NHS surgery as far as I’m aware. My Endo has been so severe I’ve only seen private surgeons, I wouldn’t go near the NHS after my GO misdiagnosed me for over 15yrs & caused untold problems! the last surgeon I saw was extremely advanced and probably one of the top three in the world at specialist Endo surgery. He suspended both ovaries and unlike other surgery I’ve had where things all stuck down again, this didn’t happen. However, I do believe something is going on in my right side within the ovary itself which I’d want investigated further and if I needed further surgery I only want to use a surgeon who will suspend the ovary after surgery. My surgeon unfortunately retired last year so I was wanting to know if anyone else had had this done in the UK. I believe there is someone perhaps in York who my surgeon trained but I’m still trying to find out more.

Thanks anyway for your message. I’m very far down in the line having had a lot of advanced Endo surgery and am a complicated case so it’s quite specific I needed but thanks for taking the time to respond. X

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