Feeling deflated :( NHS have been awful

I really feel like my pain is never going to go away. 3 months ago i had a laparoscopy and they removed a very small amount of endo. I was hoping this would be the end of it. It isn't. I had my follow up appt yesterday and they can't do anything else to help me.

Sex is so painful i cried and had to stop after about 20 seconds. I can't use tampons, i get pain in my tummy, groin and in my legs all throughout the month. But it is worse during my periods. Me and my partner have been together 3 years and we haven't had sex since sept 2012. I'm worried he'll get fed up soon :(

The gyno said to find a pill that i get on with (i have tried 3 plus the patch. All make me feel sick and i break out in bad spots) and take it back to back for 2 months and then have a break. She said if i still get pain, to try another,

I don't know what to do anymore. I'm 26 and i also have bladder problems. I have been on tablets for it since Jan this year. They have had to up the dose once already and she said they'll probs have to do it again! I can't be on damn pills forever.

I feel like no one cares. It's really getting me down.The gyno said i probably have endo under the skin which they won't be able to see. What can i do??

7 Replies

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  • Hi

    Get a second opinion! Most general gynaes struggle to know what to do with endo patients once they have had a diagnostic lap and by the sounds of it they haven't even offered you prostap or zoladex injections. For me the pain got to ridiculous levels and sex was a big issue - not good when we had just got married! I went on prostap injections and 8 weeks in I was almost 100% pain free! Yes you cant stay on them forever and there are sude effects but they have given me a very much needed break. My previous Gynae told me he couldn't do anything for me but then I transferred to a proper endo specialist and have now had extensive surgery, including have the lining of the peritoneum (abdomen) stripped which then removes seen and unseen endo. If you get yourself referred to a senior doctor at a bsge accredited endo centre they will be able to do that type of surgery if its something that could help you. Definitely don't give up yet, I would be surprised if a good endo specialist told you there was nothing they could do x

  • i had to wait 3 months for this appt :( I needed to see someone a month after my lap and that was when they fitted me in. I'm fed up of all this waiting around.

    What's prostap? I think i've head bad things about the injections and i hate needles!

    Yeah it really does feel like i'm being ignored now. It's very upsetting as my relationship has been ruined by this. It's more frustrating for my partner and i don't think it's fair on him to have to wait until i get sorted.

    I just want to be normal and i don't even know what caused this. I came off the pill last sept and this is when i started having bladder issues too x

  • I really feel for you, I have private medical insurance which speeds things up quite a lot, but in the past have pestered GPs etc and pushed and pushed so I don't get ignored. Go back to your gp and ask for a new referral. Like you i came off the pill and suddenly had all these awful symptoms but in fact I had symptoms 10yrs earlier but thought it was normal and then the pill had masked it for years. Prostap is a gnhr agonists drug which overpowers the pituitary gland and puts you into artificial menopause, I really didnt want to go on it and refused it for months as we were trying for a baby and obviously its the complete opposite of that but I got to the point where I couldn't leave the house or work and was regularly passing out in pain so having 1 injection every 12 weeks and being completely pain free was well worth it! The side effects aren't great but for me it was worth it and I'm now in a much better position to try for a baby once my system fully kicks back in.

  • I wish I had a miracle cure for you =(

    I'm in a very similar situation, only a small amount of endo was found at my lap but I'm back in horrible pain again and have never been able to have sex without pain. I haven't had my follow up at the hospital yet, but GP didn't help, just told me to wait to see the gynae again and been given pain killers.

    Have asked at clinic about trying a different pill, but the nurse said pretty much the same thing about waiting for my appointment (which won't be until January). In the meantime I'm in almost constant pain and having problems at work now because of it.

    I really hope that you find something that works for you.

  • Please get a second opinion. In the past I've said yes to things I wasn't happy about trying in terms of my treatment which ended up making me feel even worse. Go in and tell them what you want and don't be afraid to say no to things you don't want. My Gynae asked me what I wanted at my consultation yesterday. I told them I want a laparoscopy then when my symptoms return, a course of Zoladex/ Prostap. And she said yes! She tried to make me consider going back on Microgynon/ the pill or trying the Mirena again and I told her not a chance in hell as I've had horrendous experiences with both. Do your research and see what would suit you then tell your Gynae want you want. You shouldn't be expected to put up with the pain you're feeling and no sex life. I've also got bladder pain/ issues with my Endo so I told them I want them to look at my bladder during my lap. If they don't find anything she said they will book me for a camera to look inside my bladder. Keep fighting honey and don't be afraid to tell them how much it's affecting your life and don't give up until you get the treatment you deserve xx

  • Hi,

    Sorry to hear your having a tough time of it. I just wanted you to know your not alone with what your going through, I had a small amount of endo removed too, just over a month ago. I still haven't been able to bring myself to even attempt intercourse. I'm 28 and been with my partner for nearly 5 years, we haven't had sex in a year and even before that it was not an enjoyable experience due to the pain. I think it's hard dealing with the physical symptoms, but it's the emotional side effects that take me to near breaking point mostly. I can sense the frustration from my boyfriend, which leads to feelings of guilt, I wonder also why he stays with me and think that I can't offer him enough. I wish I could give you some advice to help over come your problems, but I'm in the same boat as you, I hope just knowing your not the only one suffering through this makes you feel somewhat less alone. Good luck with your treatment I hope you find something to return to some normality xx

  • Try and see an endo specialist, some gynos are useless! you can see a list of the specialists on the bsge website.

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