ENDOMETRIOSIS....seriously has crippled my life

Hiya all. Going to try cut a long story short and ask please if anyone has had the same experience or any advice for me please. I had horrendous bleeding for years since a teenager (I am 37 now) until 3 years ago when I had an Endometrial Ablation (novasure procedure) prior to this they tried giving me all sorts of pill, coil, implant etc to help with the bleeding and pain. None of these helped so ended up giving me EA and not too long after this, did they do a laprascopy to check if I had endometriosis. Which to me seemed back to front but anyways, it came back clear. I started spotting end of last year, which I don't have a problem with seen as I haven't had any periods since EA. But then start of the year my pain started up again. It's just gotten worse. It seems to happen every 2 weeks or so where I have pain under my belly button, left side lower abdomen, also to the right, horrendous back ache, breasts sore, the mood swings well not good at all, I'm tired all the time but also don't sleep well, I wee alot more at these times, I go to the toilet at least 5 times a day with loose stools but not exactly as loose as diarrhea, I'm also bloated and extremely windy and yuk yuk yuk. (apologise for the crude truth) I'm on antidepressants since December which I find has helped me not be as anxious as I was but still. I was also diagnosed with IBS many years ago and keep been told all these symptoms is just IBS. Now after wanting to have this suffering end and to start feeling human again I'm desperate for answers. Or is this all in my head. Also my iron level is usually on the low side. Hoping I've added all I can to help someone give me some light to my situation please please please please.

12 Replies

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  • Anyone please?

  • Hey

    I'm not sure whats going on..it could be endo and IBS at the same time...

    Especially when endo is in such locations as bowel it could easily affect your toilet habits and digestion in general.

    You should find a new endo gynae for a second opinion, if you can afford it go private.

    What you describe is definitely hormonal problems (mood swings, breasts sore), so it is worth it to see a gynae again.

    Make sure you do a good research and find a great endo doctor.

    If you are in London I can recommend a great endo gynae :)

    Wishing you luck

    Jo x

  • Thanks Jo. I'm actually in Gibraltar for the next 2 years as hubby is in the army and posted here. I have been back to docs and they have refferred me to the gynae I used in Gloucester where I had the procedure done. In Gib they have a gynae come out every 3 months and my doc here feels it's not worth putting it all out to him and then having to be refferred back to gloucester anyways. So wanting to get some advice as to what I need to ask for or do to try get answers. x

  • I see...

    Have you considered to follow the endo diet? its all over internet if you google it, i just got a book with recipes too, it may ease your pain and symptoms.

    Have a look it is quite strict, no red meat, no dairy, no gluten/wheat but they say it works. x

  • Wow thanks Impatient for the info. I do have that card. I will take it further and let you all know what the outcome is.

  • Hi, have you been screen for adenomyosis? this is what I'm going to ask the gynea to screen me for. I also got told I had no endo even after they found it in my first lap but not in my second. Good luck finding out whats wrong x

  • Its very easy to miss endo during a lap, so its certainly possible you have endo but then again it could be a number of other things.

    Have you ever had any bowel investigations done to check for colitis etc which could explain the bowel problems and pain? That might be the first step.

    If that is clear I would ask for a repeat laperoscopy or, if you wanted to avoid surgery, you could ask to try some drugs used to treat endo, such as Zoladex and see if it has any effect on your pain. While those drugs dont work for everyone with endo, you would probably notice some sort of change to your symptoms if you do have endo.

  • *Impatient* I have to use MOD medical so will have to stick with it and see what happens. Last night and today I am in so much pain. This week I am ment to be bleeding now obviously I don't really bleed it's very light spotting. But it seems every month it gets worse. I've not had it this bad till this month. It feels as though I have pressure in my vagina and that my insides want to come out, sort of like contractions. What the hell is going on with me. I take paracetomal to ease the pain, which it does do for a few hours and then I feel as though my whole body as been battered I ache all over. Not right seriously, I have to be losing my mind.

  • Not happy. Don't understand what's going on with me. Usually my pain does ease off and some days i don't feel too bad. But this week the pain i had was worse and different and now its there again. Feels like my ovaries are been squeezed both left and right. Also have had a pain run from my left ovary down my thigh.. All this pain is a dull ache. Hate moaning like this and it feels like its constantly. Maybe l i need to let the doc know. Or what!?

  • So I have an appointment with the gynae on 14 Nov which can't come fast enough. In the mean time I am keeping a diary of everything going on with me so I can show him and go from there. But today I had to see a locam doctor to get a repeat prescription on my fluoxotine....and this doctor decides to tell me that if i take the contraceptive pill it will help with my endo. Now unless I'm losing the plot, I didn't realise I actually have endo and how can this pill help me when I have tried it before with no luck. Can anybody please tell me what they think???

  • So I saw the gynae on Wednesday and I have to have another lap and biopsy done to see how far the endo is. He then wants me to go on zodalex (i think that's what it's called) to see if it helps and if it does help then he said he can refer me for a hysterectomy. We've tried everything over these years of all my pain etc that it's come to this now. To be honest it shocked me, even though I knew it would happen at some point. I'm not interested in having anymore children. The recovery time worries me a bit with 3 children and a husband in the army plus living in Gibraltar right now. So I would have to fly to the UK to get this done and who knows when I will be well enough to fly back home. But then I'm so fed up of being in pain all the time and so tired of being tired all the time as well. Want to feel normal.

  • What do I do???

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