Not sure where to go next

Hello, I am new here, but have been suffering for 30 years. I have had very heavy, very painful periods for all these years. Doctors didn't really care, and still don't. Over the years I took the pill, had an unsuccessful coil implanted and last year had an endometrial ablation. The coil had to be removed after three months because of pain and complications, and the ablation hasn't worked. I was diagnosed with PCOS around 5 years ago. I was finally sent to see a gynae last year who diagnosed cycts on my ovaries, polyps and endometriosis. I am sat here in great pain because I can no longer get mefanamic acid, apparently there is a production problem. My gp just says to take ibuprofen and paracetamol but this does not even take the edge off the pain. The pain runs from around my belly button to my knees. This condition has ruined my life for years, and continues to do so. I am on the verge of losing another job because I cannot work because of the pain and the flooding I get, and they are fed up of me having time off. The gynae refused a hysterectomy because I am only 43, am overweight and because of the cysts I would need a total hysterectomy, however I feel this is my only option. Sorry, its not well written and I feel like I am venting a little bit, but I can't cope with the pain and fed up of not daring the leave the house in case I flood everywhere. Any guidance much appreciated.

6 Replies

  • I'm sorry I'm not in a position to offer medical advice but from reading it have you looked into other medical pain relief? And gotten a second medical opinion on the hysterectomy other than that of your GP? I'm sorry for you that you're going through all of this, it can be painful both physically and mentally and also very frustrating. Just know if anything you have support from this website and hopefully support from peers or family or someone you're close to. I really hope this gets better for you xxxxx

  • Sorry you are feeling so bad and aren't getting much help from the medical profession at the moment. You could try OTC medicines like codeine (in something like Nurofen Plus or Solpadol) to see how they affect you. Can cause constipation so be aware. And if I was you I'd be seeking a second opinion- if not another GP to talk things over with, certainly a different gynaecologist, preferably a specialist in Endometriosis. IMHO a lot of general gynaecologists are not much good at helping. In the past I've been told I have kidney stones etc by General gynaecologists when in fact I have severe stage 4 endo and adenomyosis. Keep the faith and get a second opinion. Don't stop until you do because you will find someone to help you. Good luck.

  • Hi

    I can sympathise. It's horrible being in pain. Ask the gp for stronger pain medication like co codamol or something. They can also give you something to lessen bleeding. I had to go back to my gp lots of times- keep asking.

    Also am to go back to Gynae. They should considor a hysterectomy if you're a bit older and don't want anymore children. You can have hormone injections to reduce oestrogen production to help with the endo. I agreed with my Gynae to try that for 4 months and then she would considor a hysterectomy. I am on the 2nd month of decapeptyl injections and I must say that the pain has eased. Keep going back and asking and don't give up

  • Hi Bailey I like you have suffered with painful and heavy periods for 30 years they have offered me an hysterectomy and I'm 41 because of this site I have now been seen by an accredited endo specialist and I'm having a lap to cut endo away. Don't give up keep fighting and pushing for the right help in this day and age there is help not like in are past 30 years is long enough to suffer change docter research ask the women on here. I just put it too the docter like this if I had cancer I would see a specialist that was for cancer,I feel I have the right after all these years of suffering to see a specialist in endo. Bless you and I'm here if you need to vent x Kaysha

  • Thank you all, I have an appointment Monday with GP and put to him what you have advised. I really have had enough of suffering. I have been told the cysts on my ovaries could turn cancerous, yet was discharged from the gynaes so will ask to be sent somewhere else. And seems I have a lot of research to do. I'm good at that, spent a long time researching my underactive thyroid. It is really nice to know there are people out there who care, and understand

  • Hi - where was your endo found and what was done? Also where are you in the UK as treatment options vary?

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