I was diagnosed with endo in 2012 after my first laparoscopic surgery. Last August I had my second. From February last year right till now, my life has slowly turned into a living nightmare. The surgery in August changed nothing. They found more endo but I never got better. I'm only 23 and I'm now scheduled for my third surgery. I've lost my job, my long term partner and countless friends. I cannot exercise, do long tasks or even have a full day without feeling completely exhausted. Every single night is a struggle as by dinner time I'm in agony without any good days. I now have pretty severe depression and anxiety.
I'm terrified after this third surgery I'll not see any improvement again. I've had my close family getting money rounded up so this surgery can be private.
I feel like I'm going mad and this will be my life. Endo seems to never have good stories or happy endings. Does anyone know why there isn't more research?
Why is there so little known?!
It's taking me to go private in order for me to be taken seriously.
Why does the NHS not understand how serious this condition is?!
Also since losing my job, I seem to be very lost in the benefit system. Why is endo not seen as serious??
Written by
Claire-Kelly
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Hi I'm so sorry you're going through this. I have endo and adenomyosis and am due for excision surgery and hysterectomy (for the adeno) in a couple of weeks. After 5 laparoscopies I too am hoping this will be my last. I actually found a private, accredited endo specialist who has come with glowing recommendations from women on this forum and other forums. I even manag d to speak to someone who had surgery with him 2 years ago. She was described as "an absolute mess inside". The surgeon operated for 9.5hrs and she said she hasn't looked back since. She called him her "God send". I'm hoping I will be able to say the same in a few months time when hopefully it will be all over and I will be fully recovered. Can I ask which consultant/hospital you are being treated by? Best wishes
He's a private consultant based at the Elland spire hospital and is on the BSGE accredited endo centres website (don't think I'm allowed to mention his name on here for some reason). I obviously can't vouch for him personally yet as I have yet to have the surgery which will be 6-7hrs long but I think if he can't give me a better quality of life then no one can based upon others testimonies. If you search this forum for TPE or total peritoneal excision surgery you'll be able to see for yourself. He's not cheap and even if private health insurance there is a significant shortfall for me to pay meaning I have to take out a loan but if it works it will be worth it. Best wishes
It's a private surgeon in Scotland edinburgh I'm seeing. This surgeon is supposed to be great and he seems really confident he will help.
I'm just so exhausted from it.
Thank you so much for replying. I'm so sorry for what your going through. I really hope the best for you. You've suffered so much and you deserve to be pain free
As Lindle says, it's very important to check that your surgeon is on the bsge list. Check here bsge.org.uk/ec-BSGE-accredi... Make sure you are with an endo specialist on this list. Do check Lindle's posts as well for more info.
I suspect that your previous surgeries were done by general gynaes with insufficient experience of endo even though they might put it down as an 'interest'.
Thank you so much for your reply. I'm looking into all this for definite. It's amazing how little I actually know. I thought I knew a lot about endo but apparently I don't.
Thank you so much for all the information! It's great. I've saved it all to go through tomorrow with my mum. I'm on such high doses of tramadol and fentanyl I get my mum to go through the important things with me. I think this is going to be very important.
I might contact you again for further advice if that's okay?
It's been a long road and it's been a very struggle for everyone around me.
And I now know that the people I've lost due to the illness are the people i shouldn't have had in my life anyway.
I'm so sorry to hear you have been suffering for so long with such consequences like losing your job. I too am from edinburgh and received an emergency op exactly a week ago to remove a ruptured endo cyst and they removed a lot of endo too. I know that the edinburgh endo clinic has not long received accreditation. I was by chance operated on by an excellent surgeon who recently came to edinburgh from Aberdeen to specialise in endo surgery. It's only exactly a week since the op so it's too early to say in terms of the pain returning but he was excellent pre op when I was in so much pain and also chatted it through with me the next day. I will have follow up with him. We aren't allowed to say names here but if you google endo centre edinburgh you can prob work out. I also went to see the private surgeon who you talk of. A v good surgeon who has real empathy and wants to make a difference. He does do nhs work and together with the surgeon I had, they set up this centre. He even emailed my mum to say he had heard of my emergency op and was in the next theatre but never knew at the time. What I'm saying is you are in safe hands and hopefully with their expertise you can finally get some progress.
Also noticed there is an endo info day being held in edinburgh this sat if you look on the endo uk website for local groups.
I did, but I leave in s. Florida I'm s single mom work fulltime. There's a few OBGYN who know about Endo one Dr.... performed on me I was alright but it came back, & back..etc. Ive heard of Excised off laser surgary. There's another Doc in coral springs with the title Endometriosis Specialist. I'll do further research I guess
Hi Lindle, I hope so! My surgery's on the 20th so not long to go now.
I think Mr T's prices unfortunately have gone up since your surgery! When I told him I was with BUPA he immediately told me what the shortfall would be without even knowing the level of cover I have! Apparently he now has a special agreement in place with BUPA and the most they will pay. My shortfall is almost 100 times what you paid!
We had set some money aside for me to go back to Uni this year to re-train as my work is stressful and I believe stress impacts upon my endo a lot. The area I want to retrain in is hopefully more rewarding and also means I can be self-employed and set my own pace. The money for this will now go towards my surgery and I will have to take out a loan to pay for uni. But as you say if the surgery's successful it will be worth it and I can embark on my new career hopefully symptom-free!
I was wondering about recovery times though as they seem a little optimistic given the extent of "the work". I am having a total hysterectomy (ie uterus and cervix removed) at the same time so I know this may add to those timescales but wondered if you would mind telling me your recovery times/how it went?
For reference I'm having cysts removed from both ovaries, bladder and bowel shaved, endo removed from uterosacral ligaments, possibly one tube may need to be removed, TPE and temporary ovarian suspension. About 6 (maybe more) hours of work apparently.
Thanks Lindle for your response. It sounds like you had a difficult time to say the least. I am very fortunate in that I have a supportive husband (and a loving dog!) who can work from home most days (the husband that is!) so will be able to support me.
I must say I'm worried about the catheter part and would prefer if they could remove it before I come home!
I'm also worried as I've read after hysterectomy bladder problems are not unusual. I have enough problems with frequent urination thanks to the endo and the Adeno and was hoping this would improve after the op!
The hysterectomy portion cost £2k. I think in total if paying all of it it would have cost me £17k. Certainly couldn't have afforded that so I'm grateful I still have BUPA coverage! x
Thanks for the advice. Yes I think your right about the money side of things. It's a good way of looking at it. It's just such a shame as we haven't lived long debt free (except for the mortgage of course) so to have to go back to taking out a loan is a bit depressing as I'll be started a new career in debt! But I am one of the lucky ones at least who can afford to go ahead with it so am grateful. Will keep you posted x
Hi sorry to butt in, I just saw this particular surgeon for a consultation. He quoted me 34k for two operations. I'm so desperate to have this surgery and can't find anyone else who does it on the NHS. Any advice would be great xx
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