Can't even enjoy a stroll on the beach!

Yesterday we had all 4 of mine and my partners children... by the afternoon we needed to get them out to run off some steam so headed to the beach. It was so nice being out and about... but on the way back to the car the pain became unbearable. My back, pelvis and ovaries were screaming at me! I wanted to just cry... I can't believe how much my life has changed in the last 5 months! I am going back to see my gynea in September. .. but not sure what I can really ask for. Last year he found the endo but it's was a small patch on my left ovary which fell away. My cervix was cortarised and I was sterilised at the same time, as I have my kids now and don't want anymore and all the pills make me feel ill. So that treatment is not an option, neither is depo... I'm 36 and don't know what they will be able to offer me or what I can ask for... I don't want to spend the rest of my years until menopause going through this! I want my life back... feeling so down!

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  • You sound like me a few years ago, I felt like I had lost control of my life and that no one really understood how hard it was for me to even get up in the morning and face the world. I would constantly think about all the things I could no longer do and the simple things that other people just take for granted.

    To be honest I don’t think I really realised how low I had gotten until I had come out the other side. I to was told after my second lap that I only had 2 small spots of endo that just fell away. I couldn’t believe that was all they found as I was in agony, so much so that I jumped at the chance to have the GnRH injections. That was a huge mistake for me and I really wish I had found this wesite a long time ago. The injections caused me to have terrible migraines, I was having 3-4 a week by the time I got up the courage to tell the consultant I didn’t want to continue with the GnRH injections. In fact I went a step further and said I would like them to just leave me alone as I was fed up with them experimenting on me with different pills and injections when even they couldn’t tell me what would actually help me.

    At this point I felt kind of liberated, as if I had taken control of my body back. I bought a TENS machine and did a lot of research on pain management and medication. I was able to control my pain for a while at least and I started dance classes which helped me mentally as I felt like I was participating in the real world again. I changed the way I looked at things and rather than dwelling on the things I couldn’t do I tried to focus on the little things I was able to achieve and after a while it really started to help and now I don’t really suffer with unhelpful thoughts that often although you will hear me say ‘oh god I want to die’ when the pain gets the better of me now and again and I do get stroppy when it’s pushing me to the edge!

    Anyway after a couple of years I couldn’t do it anymore so I went back to hospital, this time I saw the top man and he operated on me. He found Endo ever where and my ovaries were twisted and stuck to other organs. I did ask him if it was possible that all the Endo could have appeared since my last op but he was very diplomatic with his answer. I guess maybe she just didn’t see it or it could have appeared since my last op but in my opinion I think she missed it. What I’m trying to say is just because your Gyne didn’t find much it doesn’t mean there isn’t more there.

    Have you tried a TENS machine? I don’t think it really gets rid of the pain but it does help. I cannot take the pills either and they keep pushing me to have a hysterectomy but I still haven’t had a child although I probably wont be able too I just don’t want the ability taken away altogether.

    I am so sorry this is so long, it kind of wrote itself.

    Victoria Xx

  • Thank you so much for your reply... I have not tried a tens machine yet. I tried one with my first pregnancy and it was horrible. Did not like it... I would love a hysterectomy, be done with the lot... I have a friend who had this done as well as what was found taken away and she said it was the best thing she ever did! I just don't think they would allow it here. My whole family have early hysterectomy for complications of some sort and all before the age of 40 and they are all fine now and don't regret there move... today I have had a rare pain free day... well that is until I went shopping, the walking around killed my back! And that's what gets me the most... that and the fatigue as even on pain free days they still bother me and it's that that stops me from doing all the things I used to... I'm still trying to accept the changes I have to make! Thank you again for your reply x

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