Endo stage 4 private or nhs? : This is my... - Endometriosis UK

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Endo stage 4 private or nhs?

This is my first time online reaching out for support, I'm pleased to have found other women who understand how It effects our quality of life.

I'm upset to see so many women online; I was unaware of how many women are dealing with this day to day.

Laparoscopy and MRI confirmed stage 4 endometriosis.

I have been told to wait 3/4 months for surgery, I am in constant pain and I'm questioning seeking private care due to how long I have been told to wait?

Does anyone have any support or info for going private for endo surgery?

Thank you for reading this 😊

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Hi! I think I am in a similar situation to you. I had a laparoscopy in April which diagnosed "severe" endometriosis - I think that's the same as stage 4. They couldn't remove it as it is covering everything including my bowel which needs a colorectal surgeon. So I have been left with it all and the intense pain every month.

I was referred to a new specialist who can deal with severe endo but as I am on the NHS I have been told I am looking at a minimum of 6 month wait till I can get the op to have it all (hopefully) removed.

My specialist prescribed me zoladex to put me into temporary menopause. Reading up about it and it sounded awful so my gp has suggested I go on the contraceptive pill and take it back to back. So I'm going to start this soon - just one more period to get through!

Could you go on the pill for a few months until you can have your op?

I considered going private so I can get it done quickly but the consultation fee is £200 at most places and then I know I would never actually be able to afford to do it as it would likely cost tens of thousands. I would be interested in how much it would cost if anyone knows?? Xx

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Hi Sarah,

thank you for replying to me :) sounds like we have similar situations, I am sorry to hear you are in pain; they have also told me stage four severe with nodule connected to my uterus and bowel.

When I asked the endo surgeon about having a bowel surgeon there, he said he would chip away at it himself, if he needed a bowel surgeon he would call one! That was not very reassuring for me, this was my first appointment with someone who I thought could get my life back on track; waited months thinking about it and he told me he there is no cause, nothing I can do about it and even when I have had surgery it will come back. 3/4 month wait for surgery....

So here we are waiting in pain :( I have been given several different pain killers but nothing seems to take the edge off pain. Have you started the pill? If so how is it going? I came off the pill last year May as my boyfriend and I wanted to try to get pregnant....I do not want to go on the pill but if its going to help with the pain then I feel like I will take anything at the moment.

I have asked the surgeon about going private and costs etc, he told me that his secretary would email prices etc, when I get the email I will post on here. He said I could go private with him then I would have surgery in 3/4 weeks!

Problem is it may sound silly but he did not make me feel comfortable or reassured, in fact I felt upset, helpless and pissed off! I emailed a specialist in London and was in ranges of £20,000!!!! I do not have the money but I would loan it to meet a caring specialist that can help improve the quality of my life through surgery and understanding.

Sorry to rant on....hope your pain is not so bad today :)

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I had a similar experience and sought out a private consultant to help me and it was at the time the best decision I made. I'm 6 years into my endo journey now since diagnosis and with stage 4 endo which is in my bowel I'm finding that my private consultant and resources is a little limited, not sure if that's just that's it's beyond my consultant but I'm having to go more and more to the NHS for certain scans etc. Anyway personally very glad I did go private to get me to a place I could function (also had Zoledex) and it found a dr who wanted to help and listen but perhaps don't cancel your NHS referral just yet

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Hi Shellfinboo,

Thank you for replying, who was your private consultant (if you do not mind me asking). How come your going for more scans? are you still in pain? It is nice to hear you found a dr who helped and listened, I would not cancel yet as I do not have enough information or direction to a specialist.

How long were you on Zoledex for? I hope you do not mind all the questions :).

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Hello Emily, sorry you are going through this.

I went private for the same reason you are considering it, the NHS kept cancelling and moving my surgery, so I couldn't take it anymore and went private!

I had TPPE done, total pelvic peritoneal excison.

The care I got from private was exceptional, from the first consultation to my last follow up, 6 months post op.

do your research thoroughly, look at all the surgeons you'd consider, their techniques, the reoccurrence rate after surgery, if they will do their own diagnostic lap first then the treatment lap, etc.

You can always make a consultation to see if you like the surgeon and what they have to say, or even ring their secretary and ask them questions.

I looked for about 1 month, and I was lucky that I was able to meet a woman who had had the surgery, who lived the next village over, and I got to ask her aaaalllll about it!

Please feel free to ask me anything and I'll help the best I can! Hope your night gets better xx

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Hi MeganMae,

Thanks for you reply, making me feel not so alone going through this now I am speaking to other women who have had/going through the same.

I can understand your frustration with NHS, I am finding it crazy that they expect women to wait in so much pain; whilst rattling with pain killers that are making me like a zombie :(. So nice to hear you was able to meet someone who had a positive experience and was not far away to have a chat about it all.

Can I ask who your specialist was and where you had this done? My partner and I are not rich; however I am willing to save/loan to get the right help. I have done some research and I am awaiting some emails back.

I would love to hear an advice or thoughts on seeking private care and your journey :)

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It was Mr.Trehan at Elland Spire.

I was very lucky that my parents paid for my surgery for me, or I would of had no chance of being able to afford it!

I will say, I Am still in a lot of pain, however I have Adenomyosis, Pelvic Inflammatory Disease and PCO, but I do believe that the pain and fatigue from the Endo has gone, I can work part time now and I couldnt work for 1 year before the surgery.

It took me a good 7/8 months to recover fully, I had a wonderful 3 months pain free but then I got a UTI and it all went downhill from there!

Sometimes we feel it was a waste of money, but then we look back at how I was and I was practically bed-ridden for a year, so it did give me some of my life back.

Going private is a huge decision to make, but if you can try get to a BSGE centre like these ladies are saying, then it could be worth waiting to get there on the NHS and save yourself some money.

I know waiting is the devil and it's so hard, I always tell myself, it's been 3 years, what's 2 more months!

I really hope you get to where you need to be, you could always pressure your GP into getting you seen quicker! Xx

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Hi

i'm in the same boat at the moment..stage 4 endo...been referred to endo specialist centre....just wondered what the nhs could offer in terms of excision? or is this something i can only get through a private consultant?

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Whether you see NHS or private, it is usually the same surgeons. Most of them do a bit of both. The important thing is to be sure they have specialist knowledge of endo. Not all gynaecologists do.

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Hi Sal17,

Thank for your message back, I would like to know the answer to your question also as the dr @RBH told me he would chip away at the nodule, no more information on how they will get it all out? I have also read that burning endo will not get the full amount off. I am going to do some research and email the drs secretary and try to find out :) If you find any info please let me know.

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Hi, i had stage 4 endo. Bowels stuck to uterus, cysts and all the rest.

Waited for surgery for 3 months but when it finally happened they were unable to remove the endo due to severity of it. I was then put on prostap injections for 8 months. It was hard! Side effects were menopause-like plus i tried controlling pain with codeine but even that did not do much. I want you to know that symptoms and pain are worth going trough it. Those 8 months were very difficult but they did come to an end and my endo was completely gone.

However, you need to control it afterwards. Do not listen to anyone who tells you otherwise. Try mirena coil, it worked for me and my mom has had it for 15 years as well.

I haven't had any endo pain for the last 4 years. I even managed to get pregnant even though i was told I couldn't.

Stay strong and if you can't cope with the pain until you get treatment go on the pill back to back, that's what i did.

Good luck!

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Hi

Thanks for your message, it was really nice to read something positive.Im currently having prostap injections, I'm on the 4th month and felt like stopping as the mood swings, exhaustion have been so bad. I think it sounds like it's worth sticking it out for the 6 months though to see if it helps.How long was it after you stopped your injections that you felt like yourself again?x

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I think it took about a month or so for the side effects to wear off. It was definitely worth it for me and i hope it will work for you too. I had very extensive endo and did not have much hope prostap would work but it did. Please continue with it if you can, there's a very good chance it will work. I feel now like my whole endo journey never happened, i know i was in so much pain for years but I don't remember anymore how it felt, i never thought I would be able to say it.

Once your done with prostap make sure you control it. You don't want all that strugle go to waste.

Good luck, stay strong and remember that you won't be on prostap forever.

xxx

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Hi Klaudia,

Thank you for replying :) Wow great to hear you are pain free and managed to get pregnant! So can I ask did you end up having surgery after being on prostap injections? I have previously had the coil with bad experiences; however thank you for the suggestion. I will stay strong, I am lucky to have a loving boyfriend who has been my rock. I am definitely going to speak to dr about going on the pill, will have to put pregnancy on hold :(.

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Hi😊

No, actually prostap got rid of all my endo adhesions and cysts so there was no need for surgery. Since then I've been on contraception(mirena) so i am not having periods at all, and so my endo has no chance to grow again. I think that as long as you remove all of it with surgery or something like prostap and then you stay on contraception you will finally put the whole endo struggle to bed. Give yourself a year or two, let your body heal and then try to get pregnant if you like. I wasn't gonna ttc for longer than a year, maybe a year and a half in fear of my endo coming back. I think i was lucky.

I struggled with mirena for the first year, i had a mild pain everyday but it passed. I was told that it's not the best option if you hadn't had a baby yet, but for me no other form of contraception could keep endo at bay so mirena was still the best option for me even though it wasn't perfect.

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Hi, I went private to have my stage 4 endo removed. It was pretty expensive though, I think the best advice they gave me around the time was to have the prostap injection to stop my periods. It's intense but does really help stop endo pain, so may work in the meantime while you're waiting? Good luck with everything :)

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Hi Delilah2007,

Thanks for writing back, who did you go private with? (if you do not mind me asking) how expensive? A few women have said about this prostap injection, it has never been offered to me? I will ask my dr about this, thank you.

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I went private with Bupa, I think the whole thing was under £4K.. but I had everything private, the scans, the pills, etc. I think there are ways you can do it cheaper if you only have certain aspects private.

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So that was all under £4,000 or £40,000? Do you have insurance that covered some of it?

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It was around £4000 for the two surgerys, which will probably not be the path you need. No I didn't have insurance for any of it, the crappy thing about endo is there's usually loads of evidence of its history (prior to starting insurance). So say you went to your doc when you're a teen with painful periods (and the docs ignores you for a good few years...) the insurance company will view that evidence and grant the condition as 'pre-existing'. I'm now in the NHS care though and I feel I'm in good hands with the aftercare ( hormone treatments, painkillers, consultations etc )

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Thank you so much for your info!

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I'm sorry you're feeling like this. I was also incredibly frustrated with waiting times and struggling to manage my pain so paid for a private consultation. The consultant actually listened and answered my million questions. He was able to then refer me back to him through the nhs but queue jump me as the consultation was already done. So this might be possible for you too?

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Hi Char11,

Really appreciate the reply, thanks for understanding the frustration! Who did you go with private? (if you do not mind me asking). I am glad he answered all your questions, I feel like I have a million questions also. How are you now after surgery?

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I had extensive excision and a hyst carried out at an NHS bsge specialist centre. Yes, it was a long wait, but IMO it was worth it. I had assorted hormone treatments to help me while I waited. I'd had surgery at a private hospital and when I had complications post op they refused to deal with it and I ended up in the local NHS hospital anyway. It's also worth being aware that if something does go wrong w private treatment, you have basically no-one to complain to other than the hospital themselves, and my experience was that they didn't care.

I had complications again after my last surgery at the bsge centre and the NHS took care of everything with no fuss.

The important thing to be aware of if you do go private is that you need to make sure you see the right surgeon. Private does not automatically mean better. As someone has said, they are all the same doctors anyway, so you can quite easily pay through the nose for private treatment carried out by a general gynae who can't really help you. There are (I think) 2 private bsge centres. The difference between a centre and seeing a consultant who has an NHS bsge centre but has a non-bsge private practice is the level of support. In order to be registered as a centre they have to carry out a certain number of complex surgeries and they have to have specialist nurses to support you. The nurses can really make a difference.

AFAIK to have excision surgery privately is 5 figures. The treatment I had involved 2 surgeries and a massive team including a bowel surgeon so would have been more.

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Hi Joreilly,

Thank you for your reply, sharing your experience, I understand what you have written I do not assume private means better I guess the waiting seems too much for me in this pain. I would like excision surgery as burning off seems to not be great with recurrence.

5 figures, so much money :(

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When you say five figures, are we talking like £10,000 or more like £50,000+? And did you have insurance to help?

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I went private in the UK. I went to a BSGE clinic in Scotland, it was £200 for consultation and around 6K for the op to remove endo from bowel/abdominal wall/between bladder and uterus and a large chocolate cyst. x

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Did you have insurance to help cover the cost as well or was that it total?

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Hi CE_88_14,

Thanks for writing back, did you have a long wait for BSGE? did you need referral from dr? That prices seems better than others I have received, do you feel better after surgery? x

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Had to be referred by GP. It took a few weeks to get an appointment then within a month of the consultation I was in for surgery. Yeah I'm fine I actually fell pregnant the month after surgery after 3 years of trying so I will see how it is once the baby is here x

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I'm no expert but if the endo is on the bowel I have been told (by 2 different gynaecologists) that there MUST be a bowel surgeon there as it's so sensitive and high risk of something could wrong and injuring the bowel.

I was given mefenamic acid and co-dydamol (I think that's the name) but they do nothing at all when the pain starts.

I was on the pill for years but came off in feb last year in the hope of getting pregnant same as you.

The laparoscopy I had and MRI couldn't confirm how damaged (if at all) my tubes are and they may or may not be able to be saved. I think as we have been trying for 16 months there is a good chance the endo is stopping something happening so I don't mind going back on the pill. It will apparently shrink the endo too which will help with the pain.

I've got to wait a couple of weeks to start the pill again as need to wait for day 1 of my cycle.

A few people on here have told me you should to go to a bsge centre. As it turns out my specialist is accredited with them and the hospital I am with is on their approved list. He was lovely too and very reassuring.

It may be worth getting referred to someone else if you are not happy. It is all so stressful and upsetting enough that you don't want to be worrying about your surgeon as well.

Sending hugs x

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Hi. We went private to see a speciaslit that came highly recommended. I called at 9:15 am and had an appointment that evening. He was brilliant and changed my pain medication. The surgery I needed couldn't be done privately due to its complexity so we went back into the nhs. I was lucky to be put into an extra clinic and only waited 6 weeks for my op. If you do go privately make sure they are endo specialist.

Good luck getting sorted

Xx

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Hi Emily,

Sorry to hear how much pain you are in and the long wait for NHS operation....I know how you feel because I am fed up of waiting too - and fed up with the consistent delays in getting a diagnosis.

How are you feeling today? A little better I hope.

I am considering private also so please keep me posted of that.

Take care of you my lovely - Ruby xx

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Hi Ruby,

I paid £250 for a 1hour private consultation after needing to go through a BSGE centre and my Drs not understating and failing to refer me to one.

I was quoted £6,000, then after looking at MRI and discussions with bowel and bladder specialists it rose to £15,000 for surgery, after care etc.

I cannot afford this or to loan and pay back, I am only able to work part time due to pains etc.

So I screenshot the BSGE website, made a NHS Drs app and asked to be referred, I was told there is no such thing! So I got out my phone and physically showed her and finally I have been referred unfortunately with a 4 month wait.........

I am feeling a little more hopeful and thank you for asking x

How are things with you? X

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Hey Emily - apologies for the delay in replying but I started a new job on Monday :-)

Wowzers - sounds like you've really been going through it hun :-(

I managed to see a private Gynecologist last week and he was great - it cost £250 for consultation so not too bad.

He thinks I may be in premature menopause due to my autoimmune disease....I am gutted but he wants to treat me in NHS snow waiting for bloods to be one and then possible laparoscopy because it could also be Endo.

I will me back with a further update disband Hope the four months wait goes quickly for you my lovely xxxx

Hope your okay - I am coping but just :-(

Lots of love - Ruby xxx

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