Endometriosis UK

2 opinions

I just received a letter from the general gynae who I saw on the 21st December 2017. She has basically said the complete opposite to the endo specialist at spire I saw.

The general gynae said my stomach wasn’t tender on the pelvic exam but the specialist said it was tender and could tell by my facial expressions as well (nearly crying)

The gynae said she doesn’t want me having a lap and to just keep trying contraceptive pills despite me refusing to take them. The endo specialist wants me to have a lap.

I’m scared the nhs won’t go through with the surgery because they are very contradicting reports

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Hi, could I ask why your refusing hormone pills? I haven't been diagnosed mind you but all this seems to have started for me because of coming off them. Is there anything that could help you.

I wondered if the private consultant you saw can put you onto the NHS himself. My plan is if I've heard nothing by end of the week I shall pay for a consultation and then be put back to NHS x

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I suffer bad side effects with hormone pills so now I won’t take them. Plus they didn’t help with the bleeding or pain

My probate gynae doesn’t work on the nhs anymore so I have to be put back through the system. Hopefully at a quicker rate but I don’t know.

Honestly going to a private endo specialist was definitely worth it. It’s just strange how one said my pelvic exam was normal and the specialist at spire said it wasn’t xx

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I'm not to sure regarding the exams, I had excruciating pain when I had swabs taken last month too and for me it wasn't normal compared to the many smears I've had in the past. Have you had any ultrasounds? I realise that they don't show endo up but can rule things out too.

I'm yet to try other contraception yet as was trying to give them at least 3 months to settle, that might be worth ago as they don't always help straight away.

I can't really be much help other then to stick with it, get stuff ruled out and keep pushing for things.

I've been doing as much research as possible and have changed my diet and general lifestyle which I think is helping.

As much as mine points to endo too I also have to remember I haven't been diagnosed and it could still be something else x

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Yeah I’ve had ultrasounds, they came back clear. Stuck to pills for 6 months and nothing I was still getting severe side effects to the point I couldn’t cope anymore.

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Spire will advise surgery because that's how they make money. That's not to say that it's not the right step, but it is something to be aware of. The NHS might take a more cautious approach but that's not necessarily a bad thing - surgery is really unpleasant and risky and there's no guarantee it will help. There is also a limit to how many surgeries we can safely have due to the build up of scar tissue, so it makes sense to try non-invasive treatments first to see if they help enough to delay needing to take that step.

I know the NHS waits are long and difficult, I have done them with severe disease when none of the hormone treatments were working and I would have pain flares that would send me to A&E. But endo sadly isn't something you can get fixed quickly, it is something you have to figure out how to live with and things like the pill and a healthy diet can help.

Other than that, I guess you just have to try not to borrow trouble. You don't know yet what the NHS doctor will say, and if they want you to try non-invasive treatments for a while before moving on to surgery, that might be something you will have to grit your teeth and do. Even if you have surgery now and they find endo and treat it, you are likely to need something like the pill as well to try and delay the return of the disease.

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I can’t have anymore contraceptive pills due to the side effects. I get them very severely and it affects my way of life even more than my period pains.

I want the surgery now even though I’m only 18 as all of this is affecting my career to be a professional athlete. I’ve tried a lot of non invasive treatments and they haven’t worked at all.

I’ve had it for a year now of non invasive and tbh even though I don’t want surgery, I need it to find answers

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By a lot, how many do you mean? There are lots of different pills and lots of things to try. Even if you do have surgery, it is not going to be a quick fix sadly. I needed 3 surgeries and it took 18 months to get any measure of relief from pain. It's really important to try and keep an open mind if you can.

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I’ve tried about 5 different pills

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Mirena? Depo? Norethisterone? POP or just combined? Diet? Could your pain relief be improved, is that something you could discuss with your GP? You haven't said which pills you tried and it might be worth asking if anyone has found any others helpful. As I've said, even if you do have surgery, you are likely to have to wait a long time to see the benefits of it and it may not help at all, so anything that might give you improvement in quality of life in the short term has to be worth a shot.

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Like I said, I refuse to take anymore hormone pills, ive tried Provera, combined (2 different ones), mini pill, injections. All gave me bad side effects. I’ve tried strong codeine, tranexamic acid, mefenamic acid. Still no helping the pain

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They can definitely improve on the pain relief in that case, so it is worth seeing the GP about that. Did you take the mefenamic acid + codeine together? You can combine pain meds if they aren't enough on their own. Tranexamic acid reduces bleeding and is not for pain relief. Things like diclofenac suppositories can help, or tramadol and they can all be combined with paracetamol as well.

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I’ve tried everything tbf

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Sorry to jump in on someone else's post, could I ask your advice about where I could go from the combined pill. I tried the mini pill after my son was born 4 years ago but bled for 13 Weeks, is this worth trying again or should I wait and take this to consultant?

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I’d probably take it to a consultant. They can discuss your best options and which other hormone pill to try. I’ve tried both and didn’t help as I kept bleeding in between periods and was still in horrendous pain during as well

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Is there a nurse practitioneror prescriber at your GP? Mine gave me brilliant advice around pills to try, zoladex etc and thinking about it I guess the deal with contraception advice much more often than GPs and consultants xx

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Hey princessk09 im sorry I really dont have anything to say that will help you but I completely understand. Im in alot of pain all the time too and the hormonal treatments too seam to give me bad side effects. Ive refused to take anymore as soon as they take the mirena out. I know there are lots of types out there but im guessing you like me are a bit scared to try them and make your self feel a whole lot worse! The surgery didnt help my pain but it was still a success to me so my doctor gave up on the idea that the pain is all in my head!

The best idea I can think of is if your gp says no to the surgery try and see if they can refer you to another hospital where you live that has gyne services. Maybe even try taking your mum if she is supportive as I think doctors sometimes dont fully listen to younger people, well from my years of experience anyway.

Also for pain relief have you tried tramadol? My doctor prescribes it for me to take along side the codeine. It doesnt help a whole lot but I can make it out of bed and down stairs when I take them together.

Best of luck x

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No, I have tried to stay away from painkillers due to something that happened in the past when I couldn’t cope with my period pains as a 15 year old. Now I’m 18 and the pains are much worse so no painkillers have a good effect

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Hugs. I know surgery is what you are hoping for. I'd have thought that the Endo specialist view would win out over a general gynae especially if more recent as your pain can have worsened over time.

I hope things work out how you want.

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Thank you, yeah they were only 2 weeks apart so I find it weird how the general gynae said no tenderness during pelvic exam but endo specialist did

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Is your pain cyclical? But yes, you can get very different views.

I've seen 2 Gastroenterologists now and they disagreed over likely cause and medications.

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Yeah I get pain a week before my period, severe 8 out of 10 pain during my period and then some during ovulation. I’m also irregular but I have light periods

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If the pain is that bad, are you going to A&E for oramorph/IV morphine as this would be recorded on your notes and would help with your case for surgery

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No I’ve never been to A&E for it

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Definitely go to A&E when it's bad, I've been 3 times in 4 weeks. I don't think I'd ever been before that, that's how I knew something really wasn't right.

Although I understand not a lot is done, the morphine helped me and it will then be on your records to help push things along hopefully x

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Yeah I just don’t feel like wasting the A&Es time over my period pain even though I’m in agony and bed bound. More people may need it more than me xx

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I sympathise with your frustration, especially getting different stories from different consultants. Having a lap is not to be done lightly because of the risk of scaring and creaing new adhesions but it is undoubtedly 'gold standard' for diagnosing endo and it's extent. Also you can get excision /ablation done at the same time which will give you some relief from it. Endo doesn't show up well on scans so just because they have appeated clear doesn't mean that it is not there. Endo deposits spread finely like pepper - so are often too fine to pick up on the scans. I've just read a book stop endometriosis and pelvic pain by American endometriosis surgeon Andrew S Cook who says that for more advanced endo that's not responding to hormonal treatments surgery by a specialist endo surgeon is undoubtedly the best option and it is best to do this before the endo spreads too much. The book is available as an ebook on Amazon and is very informative on the surgical techniques - well worth investing in if you are intent on surgery.

I wish you all the luck in the world and I am so sorry that endo is causing you so such pain at such a young age and totally understand you want answers / relief from the pain.

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