Endo Pain Clinic

So I went to my gyneo appt yesterday which over all was a very bad experience. I am asking for a second opinion as I was not happy with the way I was treated and what I was told. Being told that endo cant grow back in 9 months and not even looking at my pain diary or caring where the pain is was very upsetting. The gyneo had no sympathy for what myself and boyfriend are going through or that i am now taking more time off work than ever due to the agony. I have lost a kilo in 2 days due to the pain making me feel so sick!

In the mean time i am being referred to a Pain clinic at my hospital. Has anyone else been to one of these before and if so what should I expect to happen. I have already made other changes that I was recommended which has not helped. Such as change of diet, going gluten free, juicing, yoga, running, baths, hot water bottles... the list is endless!

I don't understand how any of this will help the physical symptoms such as bleeding after sex etc? I want to go in with an open mind however not sure what to expect.

Any advise and experiences would be grateful.

Thank you ladies! x

4 Replies

  • Your gynae is inexperienced and you are right to get a second opinion or, more accurately, referral to a someone who specialises in your condition and not just a general gynae. i.e. an endometriosis specialist. There are endo centres across the UK. Choose one here bsge.org.uk/ec-BSGE-accredi... and tell your GP to refer you to your chosen specialist.

    Endo can certainly grow back within 9 months or less. Plenty of women on the forum to prove this. Especially if it was treated by an inexperienced gynae who didn't remove all of it. I posted a link to some really good overview information on endo this morning. Your gynae sounds as though they wouldn't know any of this information.

    The pain clinic is where gynaes send cases they don't know how to deal with properly and is a cop out in your case. You could go while you wait for your endo specialist appointment to tide you over with some pain management but your GP should also be able to help with pain meds and might be better.

    Your gynae had no sympathy because he/she was out of their depth and wanted you out of their surgery asap. You are in pain and you need a diagnosis and treatment options not pain pills for the rest of your life.

    Good luck. x

  • You are right to get a second opinion. I had a laparoscopy, and my gynae said that endo can start to come back as soon as you have your first period after the op. After all, endo is exacerbated every time you bleed. I am having Prostap injections for 6 months so I don't have a period for this time, so my body can recover from the op and give me a break.

    Brownlow is right, the doctor was out of their depth, and their shocking attitude and words is all about them projecting their inadequacies onto someone else. Please don't feel disheartened, I hope your next gynae is a much better one.

  • Don't be too disheartened by the thought of pain clinics - they can be really useful in providing you with a wide variety of ways to better manage or cope with pain.

    Not just endo pain - but all types of pain.

    Even if not immediately helpful, it is still worth doing and taking note of their suggestions and advice for the future. You never know when it will come in handy. Bit like doing a 1st aid course, you hope it won't be needed, but as and when and if it is, then you have some nuggets of useful info in your memory to help you deal with it.

    They can cover homeopathic remedies, exercises, self hypnosis, acupuncture, diet, medication reviews etc. All sorts and there certainly will be things you had never considered before.

    It isn't a substitute for a decent surgeon it is complimentary additional tool at your disposal to help you to better manage your pains yourself.

  • Thank you ladies for your additional information. I am happy to try the pain clinic however, not sure if this is going to help with intercourse pain and the bleeding that follows. This is something i repeated in my appointment however was quickly dismissed.

    He believed that because I had the mirena at the time of my lap then the endo cannot grow back. Even on Endo uk + mirena website it states that the mirena does not always stop ovulation.

    I have written a letter to the lead who comes highly recommended asking for a second opinion as i found the first appointment very disappointing and even reduced me to tears when there.

    I try my best to stay positive however it feels like i have taken 10 steps back!

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