Hello everyone, I'm due to have a full hysterectomy on the 23rd due to large fibroids and undiagnosed endo. It was only found a month ago and basically everything is a mess inside and my bowel is stuck to my uterus.
I'm reading a book by an American doctor Tamer Seckin MD called The Doctor will See you now.
In this he talks about Laparoscopic deep excision surgery which he says only a few surgeons in the world do. I quote from the book:-
This involves all forms of endo are cut all the way down to the root (as is the thick surrounding sat tissue) through just a few small incisions made in the woman's body. Laparoscopic deep excision is performed with the use of very thin instruments, including cold scissors and a laparoscope which is fitted with a miniature video camera.
This doctor said this is the gold standard for removing endo.
Does anyone know of a surgeon who does this in the UK? Or does everyone use laser here?
My surgeon is going to cut away my endo when she opens me up which I hope will have the same effect but as I know endo can come back I want to be prepared.
Apologies if I'm asking stupid questions.....just feel in the dark....
Much love to all of you
Windancer05
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Windancer05
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Hi, I'm afraid my limited awareness of Endo is of no help to you, but if you don't get any more answers on here , why not contact 'Endo Uk' themselves. Their advisors should be able to advise you - added to which, we posters are not supposed to name names on the site - as 'Endo Uk' could lose it's charitable status (although posters can send you a private message via the 'PM' system here on HU. However, your GP should know about the protocol for referring sufferers of severe Endo to specialist Endo Centres or BSGe Centres. These are staffed by some of the best Endo Specialists, with all sorts of Bowel - Endo etc surgeons on hand - or ask the Consultant who is doing your op. But do talk to 'Endo UK'
What you’re looking for is a BSGE accredited surgeon who is trained & practised in excision surgery, the gold standard for endo. You can search for a surgeon via their website. I didn’t have one & ended up with a failed hysterectomy. Under the care of a BSGE surgeon now & heading in the right direction. There is an Endo FB support group run by Linda Wright, where you can get feedback on individual surgeons. Hope this helps.x
My surgeon is BSGE accredited. She says my insides are such a mess and the fact I'm 50 that a hysterectomy is the only option for long term health.
She was a bit short with me at my last appointment and as I was rushed into hospital in July with the worst pain of my life I'm too scared to put it off. If I had the money I'd go private, thank you so much for taking the time to reply to me, hxx
Hi,
I originally wanted a hysterectomy but then found out that it's not a cure and many women with endo who get one are still in pain after i had stage 4 on the recto vaginal area, i think it was, so even if i got my womb removed, I'd still have endo on my bowel so I'd still be in pain, after first excision i was pain free for nearly 2 years, but I had another surgery at a different hospital, mri, the surgeon did a diagnostic lap and then a removal lap and I'm pain free a year on <3 the surgeon was amazing, seriously look into hysterectomies before getting one x
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Thank you so much for your reply, I'm just copying my reply to Mands. I'm too scared to put off this surgery because I know I couldn't go through the pain I experienced in July.....as all of you know this pain is like no other and my insides are a mess according to my surgeon and she is BSGE accredited. And runs a endometriosis clinic once a week and specialise in Endo cases, hxx
Hi I was with a bsge surgeon I had grade 4 endo attached to liver kidneys and bowel. Had full hysterectomy 2 years ago and have never looked back. I'm now 47 and feel like I've got my life back. If your unsure about anything phone you endo centre and as for appointment to discuss all your options. My surgery was done by keyhole and all pain has now gone and endo was completely removed. Don't hesitate to get in touch if u need more info.
Thank you so much Wendy, I feel like such a fool because although I had heard of endo ...till 6 weeks ago I didn't know the implications, the fact I must have had it for so long and the solutions and answers are so varied. I just want to get through this and pray all the endo is removed. I've changed my diet, I'm taking recommended supplements I can't exercise as much I wanted to because I strained my back two weeks ago. So I'm a bit worried about my big tummy but I'm choosing to hope for the best, with much kindness and respect, hxx
Don't feel like a fool until I was diagnosed in 2002 I knew very little about it as well. Has you endo clinic given you enough information about it. I notice you have changed your diet I did the same and changed to all natural products and no prossesed and gluten product which helped me a lot with my bloated tummy and also helped my bowl movement which was very sluggish due to the extent of the endo on bowls. Can I as what kind of supplements are you taking.
I'm on a herbal mixture which my herbalist formulated for me. It's to strength my immune system and keep any infections at bay. I've been on it since the last week in July after my emergency hospital stay. I'm also taking a supplement from MitoQ. A multi vitamin, omegas, vit D, liposomal vit C, iron and Royal jelly....this is very expensive but I've been on decapeptyl injections for the last 3 months they have stop my periods and have hopefully shrunk my fibroids. My surgeon said the injections will cause the symptoms of menopause but apart from a few 30 second hot flashes very few I might add and a few times of low mood I haven't really suffered so I'm not giving it up. I also looked up Advanced supplements after reading a post on here and will start them after my op. I'm drinking peppermint tea and eating loads of veg to hopefully bypass bowel and excess wind problems. I've had that every month on my period days so am praying I'm doing enough that I won't have to strain post op. Ive also given up bread and I never thought it would make such a difference! I'm drinking approx 1-1/2 to 2 litres of water a day. No dairy or meat but lots of bone broth I make myself.
I've just taken as much advise from this wonderful site and all you amazing women as I can and now I feel I've done as much as I can.
I've read that your waist can shorten after a hysterectomy due to movement of internal organs this worries me as I'm 'under tall' and not as fit as I'd like to be anyway...but I'll continue to read people's stories and may gain answers from these,
Hello, I had a total abdominal hysterectomy retaining ovaries in April so 6 months ago now, due to severe endometriosis, which was initially diagnosed almost 20 years ago! The endo was on tubes between kidney and bladder and pouch of Douglas ( between bowel and uterus) and due to sensitivity of the sites could not be removed! I tried every kind of therapy but in the end the only way was hysterectomy. My consultant and I agreed I retain ovaries as I hadn't gone through menopause but as the endo sites could not all be removed and retaining ovaries I could still have some endo pain as those sites will of course still bleed but to date I haven't had any problems with pain! Its fantastic no longer having the heavy bleeding every 15 days ( yes, my cycle was soooooo short) and looking and feeling washed out all the time. My resistance is much improved to colds and infections and I have way more energy! The operation itself went well and of course it was painful for several weeks as it was total abdominal due to the severity of the endo ( plus I'd had an emergency caesarean seven years ago), but I am much improved now. Area still a little tender but every day I feel so much stronger!
I was terrified prior to the op but now would highly recommend to anyone who has to suffer the horrors if endometriosis!😊
I would also add that the 'swelly belly' thing does eventually lessen! I find that swimming is fantastic exercise. Diet wise, common sense really, just eat foods that are likely to cause excess in moderation. Also, keep a packet of windeze or windsetlers handy and drink peppermint tea! The wind is a problem for the first few weeks but everything really does settle eventually! Xx
I had my hysterectomy at at QC in Acton. It’s a endo specialist but my endo was not taken out. I was told it was inactive. My surgery was complicated but 7 weeks on I’m feeling good and apart from a few things I’m quite positive.
I did find another surgeon in London who only works privately but that was 2 days before my op and I wasn’t strong enough to cancel my op.
If I had my time again though I would go with the private surgeon. I might have been able to save my ovaries and cervix at least.
He works the same way as Dr Seckin. I would have gone to see him. I would have begged, borrowed or stole to see him and be treated by him. His stats are amazing and he has never removed both ovaries. He has always managed to save at least one.
I hope you get the best help. Remember you are allowed to speak up and be heard. The best of luck.
I just finished to read the book " The doctor will see you now"
I am looking for doctors here in UK that are of the same caliber of dr. Seckin and work with in NHS . Could you provide some names for me please? Where can I find them?
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i had stage 4 on the recto vaginal area, i think it was, so even if i got my womb removed, I'd still have endo on my bowel so I'd still be in pain, after first excision i was pain free for nearly 2 years, but I had another surgery at a different hospital, mri, the surgeon did a diagnostic lap and then a removal lap and I'm pain free a year on <3 the surgeon was amazing, seriously look into hysterectomies before getting one 
x
Always scary when your consultant says she is too under-qualified to deal with your endo...
Excision and bowel surgery
Endometriosis excision surgery 
"The Case for surgery for endometriosis" Insightful article explaining why laparoscopic excision is currently best proven treatment for endo
pain after surgery 
