Had enough with doctors

Opinions please ladies. So I've been in hospital and after being told by two gynaes the ridiculous pain I have is endo and sounds like adhesions. Another Gynae consultant this morning has told me they won't be from Gynae pain as I'm on prostap and that solves endo. I didn't think there was an actual cure for endo just treatment to help? Am I to just be fobbed of with this and suffer or push for something more?

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  • I am waiting for an appointment to start prostap, but was told by my consultants registrar that if Prostap helps it indicates my problems are all endo related and that a hysterectomy, with ovary removal, might be an option. But to be fair he did qualify that with if you're still in pain on Prostap we might need to consider that the pain isn't gynaecological. I would suggest you don't put up with being in pain, have you had a lap recently? If not I'd push for that as it's the only way to know for sure. Good luck, hope you get sorted.

  • I had one in November which confirmed endo. They won't do another one so soon. They've mentioned an oophorectomy but that's my actual outpatient surgeon.

    Just gets me two said it sounds like an adhesion over my ovary and bowel yet they've done nothing because another one said it's not Gynae

    I'm not saying prostap doesn't help endo as my pain was getting better until this. But if I already had endo/adhesions the prostaps not gonna make them go surely?

  • Maybe you need to request to see your original surgeon again. Seeing multiple doctors has never got me anywhere it's very frustrating i feel your pain :(

    If your pain was getting better that's a good sign regarding the prostap being helpful. I think you need to see your original surgeon and find out what the plan is going forward, ignore what the gynae said today as some are better than others. I've seen a fair few shocking doctors, and now I've found one that seems good I'm aiming to stick with her and her team!

  • Hey hunni,

    I'm so sorry that you're having a very rough time at the moment. Sending big hugs!

    I would push more with the doctors!

    Prostap is not a cure for endometriosis, it puts your body into a medically induced menopause to see if your symptoms improve. Your symptoms will likely come back when you stop the treatment.

    I started prostap 3 on the 3rd of January (I think) due to pain getting worse and been in pain everyday. I had a massive flare up about 3 weeks ago and was rushed into hospital. I had an ultrasound scan which revealed I have a cyst on each of my ovaries and my left ovary is fused to the back of my womb. My Fiancé asked if it was due to the prostap and my BSGE specialist said no, it's a flare up of the endo and I need a hysterectomy. My endo has given me nothing but grief, I've had all treatments available, mirena coil, excision surgery, now on prostap.

    Due to other medical conditions I've suffered with from a young age I want to have the hysterectomy. I know it doesn't cure endo and I'm still very young but I want a life. I've not had a life since I was 12 years old. I'm gonna be in a wheelchair before I'm 50 & I want to live for now!

    Keep pushing with the hospital sweetie and don't give up!💛💛💛

  • I can only speak from my personal experience but Prostap entirely resolves my pain. The endometriosis specialist nurse at the hospital told me that in a sense that's a good thing because it indicates my pain is all related to my endo xx

  • Hi Nikki. Sorry you're having such a bad time. Prostap doesn't work for everyone. If disease is severe it will have little effect, as severe endo produces its own oestrogen. Definitely keep pushing Hun. Are you at a BSGE centre?

  • I am on prostap at the moment but had 5 months of decapeptyl last year which didn't stop my periods and was abandoned due to pain. The consultant at the bsge centre told me the drugs aren't an exact science. Sometimes they don't work. It is entirely possible to be on these drugs and still be in pain.

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