Advice from what I can read the real experts YOU

I have been in constant pain in my hips, lower back and pelvic area for 5 years, after seeing lots of physio, chiropractor, and osteopath. I had a MRI which showed a small tear in my L5 nothing that would cause this pain. I have been back to my gp over and over again. I have periods every two weeks, painful and very heavy, the pain gets so bad before and over my period. Bloated stomach, no energy and my family would say up and down temper. My GP said it could be endo, sent me to a consultant who before I sat down said I don't know why you are here and said you know you can get back pain with periods!! I could give you a lap but may tear your bowel, I felt humiliated and said all my symptoms, then he said ok to see if you have I can give you implant Zoladex it will stop the periods, told me nothing of the side effects. I have now had not much sleep since xmas, constant hot flushes, migraines, leg muscle pain. All for something I don't even now if I have. I have 3 children which with age took me time to conceive, last one two years. My family are bored of my moaning, so I turn to the experts you and do you think it matches your disease?

6 Replies

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  • Hi sorry to hear you are having such a tough time :( I'm fairly new to this myself but your symptoms do sound similar. I get awfull hip and back pain and very tired most of the time. I was finally diagnosed with endo after years of pain and being dismissed with a diagnosis of IBS the firs gyne I saw made me feel like an idiot and I left feeling embarrassed! However thanks to this forum and all the ladies fantastic knowledge I got the courage to ask for a second opinion. I got it and was givin a lap and endo was found. I have to say it was a bit bitter sweet I was glad I knew what was wrong but at the same time wish I didn't have it cos it's horrible to live with sometimes. In not sure about zoladex but if you type it in the search bar you shld find lots of info from other ladies who have tried it. And it's awfull that you weren't given more info in it from your gyne but I think that too is something that happens often. Get as much info as you can and don't be fobed off. Wishing you lots of luck and strength hope you get your answers soon! X

  • Tired123 thank you so much for taking the time to reply to me, it really helps, I am interested to know where they found your endo?. He said I couldn't have it as I do not have painful sex, to be honest I was too embarrassed to say to him, my cervix is so high up and I don't think my husband can reach it :). Do you have that symptom? I just want to know what it is and like you, will be upset if it is endo, as not much they can do by the chat on here. I am going to grow a pair and ask for another consultant who specialise in endo. Are you pain free now? Thanks again for taking the time it really helps xx

  • Pleaseee get onto a good endo specialist because all the symptoms you are experiencing are exactlyyy what I had - absolute chronic pain in my lower back an hips as well as pelvic area and turned out I had endo spread over both the right and left ligaments that hold the uterus in place !! You need to get onto it asap women like us keep getting turned away and its humiliating!

  • Thank you so much, just hearing that my symptoms are the same as yours and I'm not making it up is so nice to hear and more determined to get the right help and not being told to live with it. Funny how complete strangers can help you deal with something that has made you feel alone and frustrated for years. I hope that this makes you smile today and has helped with your journey with this disease. x

  • Hi there. Firstly, I cannot understand why anyone would put you on Zoladex if you have not actually had a laparoscopy to diagnose Endo! But I guess that it between you and the consultant. Secondly, your symptoms are the same as mine were. I had anaemia from the heavy bleeding which caused terrible tiredness. My period problems had been going on for almost 30 years and for at least 10 years I was taking Tranexamic tablets. I thought that the pain I was getting was the same for everyone and was 'just' heavy periods! I was originally referred to hospital two years ago because the clots etc...were getting worse, I had more pain and I had an above normal blood test reading for CA125. I saw a consultant who asked me all those questions and because I didn't answer yes to all of them he said he didn't think I had Endo which had been suspected at this stage. They did a hysteroscopy (never again!) which luckily came back negative. Then the consultant suggested that I had an endometrial ablation op done which helped a little with the bleeding but not the pain. Months later my GP got me an internal scan done and a dark shadow was found on one of my ovaries and all hell broke loose! Within 2 weeks I was in hospital having a laparoscopy done and was found to actually have severe stage 4 Endo just about everywhere and the dark spot on my ovary was a chocolate cyst. Everything was so badly stuck together he couldn't do anything. I was then put on Zoladex which I did not get on with at all (terrible headaches and nausea)and then Depo-Provera (I still have severe pelvic, back, and also some leg pain with this medication) which I am just finishing and that I also don't think has helped much either. I am about to see if I can carry on with no treatment for a bit. Luckily for me I am close to menopause so I could now consider a full hysterectomy (ovaries too) if I want to. Like you, I feel my family finds me a huge nuisance. Whenever I say I am feeling unwell it feels as if they are thinking 'Here she goes again...!) I agree with tryingtobetrong; try and get to see an Endo Specialist; you need to find out for sure what it is you are suffering from and get the right treatment! Good luck! x

  • Hi, sex was never painful for me however I have been single for the past 3 yrs and I honestly have not missed it so I'm not sure if that's because I'm in constant pain or maybe hormones? I am still in pain an waiting to see gyne again so not sure what my next step will be. All I know from my lap is an area of endo was removed from left hand side of womb neither me nor my GP have been able to get any more info than that. My notes were very brief but surgeon did put note on saying if it did not help pain I was to be seen as urgent so hopefully it won't take too long. My pain is never only one side it's always whole pelvic area back and hips. X

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