Has anybody seen a private dr for excisio... - Endometriosis UK

Endometriosis UK
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Has anybody seen a private dr for excision surgery

I'm desperate for a way out i have to go bck on zoladex husband doesn't want me to and now I'm finding it hard what to do 😔

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I went private to have my endometriosis removed. Luckily enough I have BUPA through work and there was BSGE specialist within an hours drive of me. It was really quick from first consultation to being in for surgery and if I hadn't gone private he NHS wouldn't have touched it x

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Did the excision surgery work? Where abouts did you go? Xx

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I'm still early days but so far so good I don't think they excised the bowel endometriosis they shaved mine as my ovary was stuck to my bowel. The reason I went private was for quick treatment as I'm due to start another round of IVF soon and when I was diagnosed due to needing my appendix removed the NHS surgeon said it wouldn't affect my fertility and they wouldn't remove it as it wasn't severe enough x

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It's wrong to say that the NHS wouldn't have touched it.

NHS specialist BSGE centres are just as capable of dealing with Stage 4 as privately paid for treatment. It's not necessary to pay privately to have Stage 4 endo treated, the key is to be in a BSGE centre xxx

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I have to agree with janine, I had a nhs laparoscopy which took 4 1/2 hours rather than the 1-1/2 they thought it would (because it was more severe than predicted) with an amazing surgeon who (according to a few nurses & another doctor) is one of the best in the north west and also works privately. I was under a BSGE centre and although of course I'm very lucky to have been assigned this particular surgeon, I found all the staff extremely knowledgeable and competent xx

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I agree with Janine. I had stage 4 endo that had gone through my bowel wall. 2 excision surgeries later (and one unplanned op) I am now pain free! I was under a BSGE centre following a referral from my diagnostic lap. I opted for surgery as hormone therapies did not agree with me and I felt it was delaying the inevitable.

I hope you get sorted

D x

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Thank you I have endo on the bowel and have no idea what stage it is. I have no idea where to start to find a private surgeon xx

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Where are you based mommyto3boys? x

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Based in Norfolk currently under Norfolk and Norwich hospital but I've been told of o don't go back on zoladex gynae won't help me. Husband is worried about me going into medical menopause. I'm between a rock and a hard place at the moment. If the zoladex works then the end of treatment plan is removal of ovaries but hubby is concerned and has done his research and it's worrying him. I have no idea what to and I feel this could be my best option xx

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What are his concerns? I have had 2 courses of gnrh analogues, 5 months of decapeptyl last year and 3 months of prostap this year. I had a hysterectomy and oophorectomy 7 weeks ago. I also had endo on the bowel plus a large rectovaginal nodule and the whole lot was excised. I was treated at the big bsge centre in London. With severe disease we don't have a lot of options, sadly :/

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My husband is worried about how the menopause affect me and he doesn't like the idea of hrt eithier. My gynae wants to do zoladex and if it works on pain etc then oophorectomy as and end of treatment plan but my husband now thinking if it would be better to go private and have it properly excised out

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Hi i live in Norfolk and and I go to the bsge centre privately via my work insurance

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I'm under him and he wasn't that pleasant I wrote him a letter I was that upset with how things went. He won't help me unless I have zoladex he won't do surgery. He did my last lap about 2 years ago and was great

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I don't think any surgeon is allowed to refuse treatment if you aren't getting on with a hormone treatment. Under the EHRSE guidelines surgeons aren't meant to use zoladex purely pre operatively to shrink tumors any more. Interestingly he is very keen i stay on my trial of zoladex which i have not been getting on with.

You can ask for a second opinion or choose a different BSGE surgeon.

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So I'm not the only one then? Hhhmmm I had one month it wrecked me. I went back told him his attitude was for goodnesss sake I was absolutely appalled at the way he treated me. I have a meeting with him on the 22nd but I'm struggling what to do. I'm going on it to please him despite how it affects me.

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Please don't take a drug you don't want to please the consultant. It's your body, not his. They are there to help, not to bully us into treatments we don't want. And in all honesty, having had both the gnrh analogues and now being in surgical menopause, if (reversible) chemical menopause doesn't work for you, it begs the question of how irreversible surgical menopause would be any better.

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The oopherectomy post zoladex trial is exactly what he recommended to me too . I got cold feet about the menopause and risks so am going to opt for excision. What endo do you have?

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I don't know of stage but I am aware it has spread

To my bowel when I had the last lap

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Hi Starry - can you tell me more about the EHRSE guidelines on hormone treatment? My Dr said I need 6 months of hormone treatment before they can operate again on my stage 4 endo to shrink the fibroids that are in the way. Is this not the best course of action?

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Hi they can be found​ here. There is a patient version and a full one.

eshre.eu/Guidelines-and-Leg...

The only apply to endo so may not be entirely applicable to your situation. The recommendation is that the zoladex is not used solely for the surgical outcome but for pain, through it does recognise that there are surgeons who use it for inflammation reduction. See page 48.

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Exactly!!! I am end of month 2 first month killed me with brain fog so he doubled the tibilone. Lots do get on with it and all these hormone treatments so take several months so i i am trying to stay the course, but hating it.

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I went into depression, was very tired and basically hormonal wreck on zoladex and tibolone. He advised I tried again without the hrt addback and see if that helps 😑 takes 3-4months for zoladex to work then time you get the benefit your off it again because the 6 months is up.

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I was the same with zoladex did 5 months of 6 months could not cope with the last one I tried with no hrt as I thought what was the point of getting rid of natural hormones to replace with synthetic ones I DO NOT RECOMMEND dr tired to get me to do another course for the pain but I cant put myself or my family through that nightmare again even if it does mean being pain free would rather have the pain than become that person again.

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I don't even see the point as i would be operated on in less time being private. He said it was to see if the oopherectomy was an option. But after negative feedback and a list of side effects as long as your arm he agreed to go month 2 by month. My issue is fatigue, more than pain. I wouldn't function at all on zoladex without the hrt i couldn't string a sentence together but apparently there are different hrt drugs to try.

The oopherectomy is a valid endgame scenario but so far as i have found it is unusual and you are also meant to have the excision too. Was that what he suggested to you? Or only oopherectomy?

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Just an oopherectomy I believe.

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There's a few excellent private endo surgeons in the UK who do take NHS patients also (although you have usual NHS waiting times etc) I'm having excision with one privately next week then going on his NHS list. Not sure if you're part of Nancy's Nook group on Facebook but they have a curated list of the top endo surgeons according to how they treat and patient feedback on results.

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I'm not no but that sounds interesting. I am seriously considering the private route.

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It's not so much NHS or private as finding the right approach i am private with the same surgeon as mommyto3boys

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Can i asked how old are you ladies without being rude? I was put on zoladax after my first lap to control it to make my second lap easier. I lasted about 4 months before i folded. But anyway, ive never ever heard of it being used as a tester for oopherectomy? I thought it was the NHS' best interest, and the patients to maintain ovary function? Mine where shot but my surgeon excised them both without a problem .. Zoladax is temporary because the menopause is damaging to health, especially bone health. Maybe speak to your gp. Im 32, no kids, dont plan on any, but they tried their hardest to leave me intact, only removing one fallopian tube that was beyond help!

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I had my ovaries removed 7 weeks ago and I'm 39. Fertility wasn't an issue because I have children and didn't want more but I was also given the impression that removal of ovaries is very much a last resort. I had a total hysterectomy because I had adenomyosis, I then had my fallopian tubes removed because I had a hydrosalpinx in the right tube, and I had excision of endometriosis from my bladder, my right ureter, and I also had a large rectovaginal nodule plus further bowel endo, and then cysts on my ovaries. Because of the extent of the bowel shaving needed to remove the endo, my specialist said that it was important to minimise the risk of needing further bowel surgeries and that removing my ovaries would help with this. I'd had all the drug treatments and none of them had worked. Age wise, the specialist said although I was younger than you would ideally be to go into menopause, because it was such a major surgery it was better to have it now as recovery is easier when you're younger. But it was explained to me very carefully and I was given a lot of time to talk it through with all the staff and to think about it before I agreed.

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I fully understand your position, im in a very similar position as no treatment has worked for me, but what i dont understand is why this surgeon seems to be pushing this lady into something she clearly doesnt want. Im not calling the option, for some people it is the only option, and i hope you now find relief, but you was given the option, the side effects, then time to think about it! That too me sounds the right way, unlike the OP is given none of that? That too me is what i dont understand! After trying Zoladax, im already aware that menpause is something i dont want to endure just yet and it seems to me the OP is feeling the same way!

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Yes, I agree.

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I remember waking up from my diagnostic lap and my surgeon being there and saying "we couldnt do anything cuz youre a mess but you have endo and a massive endometrioma on your left ovary". I somehow managed to get out in my post aneasthetic state "will that ovary be removed". His exact words were "we do our utmost best to save organs and only remove them if necessary, at your age we will try more than our best to save them". I did end up having a fallopian tube removed cuz just like yours, was useless! Id feel very uncomfortable if i was pressured into something i didnt want. I just dont understand why this surgeon seems to be giving the same advice to everyone. I can fully understand why you was given the option as yours definitely seemed on the severe end of severe endo and your dr was right as bowel surgery is the most dangerous of them all! But to give a few people that only option. It is very, very last resort once everything else has failed!

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I'm 42. My GP is clueless. I know more about endo than they do :( .

I have heard mixed reviews of Nancy nook as they represent a very specific school of thinking. Trouble is it's impossible for me to understand the whole thing.

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I'm 31 years old and have children but hubby thinks me going into menopause is a bad idea

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If you look around its not a complete cure. Endo can and does, especially if its an aggressive type, can grow its own blood supply and produce its own estrogen, just like cancer! Taking ovaries away doesnt mean you will definitely be cured. Id no way accept a hysterectomy and im infertile! But the choice is yours.. Id definitely think long and hard about it and dont allow yourself to be pressured! Good luck xx

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So the same surgeon steered me towards oopherectomy and after feeding back my reluctance has now said he will do the excision op. But how do I know if he is really up for it? He must certainly think the zoladex will help the op is the only thing i can think of to ask me to keep going. The oopherectomy only line does seem non standard but then is that good or bad?

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It's hard to know now wether they have our best interests at heart. I'm 31 years old and have children but my husband thinks going through menopause at this age is asking for health problems so now I'm more confused than ever 😑

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There are plenty of studies about long term health risks of dementia, cancer and heart disease. I joined a hysterectomy forum as i couldn't find anyone who'd had a oopherectomy and was told the reason is there is a risk you may also end up needing a hysterectomy later anyway so they mostly do it all together unless there is a cancer issue. I'm 42 and still feel too young for menopause. My brain literally stopped working on the zoladex without the hrt. I think after about 45 the risks are lower so i am closer to an "okay" but even so. At least with the excision the lump is removed and it's diseased stuff they are taking. It's the only way i can get my head around it.

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I am seeing a private consultant who runs a BGSE clinic and the NHS are paying for it. Ask your doctor to refer you. Hope this helps x

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LouLou, the surgeon we are discussing is already running our nearest BSGE clinic. That is the reason for our concern.

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ladies has any of you permanently got rid off endo symptoms after excision laparoscopy? i had mine just in feb 2016 and symptoms came back in oct 2016 so not sure if thats because surgeon messed it up, or because thats how endo is.

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There are several reasons why it's possible to get pain post surgery. Recurrence of endo is one, incomplete removal (eg after superficial ablation is another) the development of adhesions (post op scarring ) is another that is hard to avoid for any surgeon and why multiple surgeries is not ideal, also nerve problems simply due to chronic internal inflammation as a consequence of endo that can persist even after it is all gone. Best bet is to go back to your surgeon or another BSGE accredited one for a check up. This about the healing process is a good read. centerforendo.com/is-my-end...

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update:

after seeing my consultant yesterday im now on the list for excision, i have to see a colorectal surgeon and stoma nurse due the fact my bowel is tethered to ligaments that hold the womb. thsi explains alot of my severe back pain, urgency and pain to the toilet. i feel relieved, terrifed and excited in one go.

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