What should I do next?

Hi everyone. I was after your advice. I have suffered symptoms for over 5 years now. These are: heavy periods which are regular 28 days lasting 7 days, flooding, large blood clots, severe abdo pains (like labour pains) which go down thighs, ocassional rectal bleeding following motion, painful sex. I have 2 children ages 9 & 7. I used to take contraceptive pill before having kids but was taken off due to suspected blood clot in lungs. had scan june last year which showed uterus tilted and small fibroids. gp put me on tanexamic acid which reduced blood loss but not helped pain. was then given mefanamic acid but had a reaction to this so I had another scan dec last year which showed large 2" blood filled cyst on right ovary and was referred to gynae. in aug gynae registrar examined me and said I had stage 4 endo along with endometrioma. they decided I had to have a lap to remove cyst and possibly tube and ovary if necessary. they said they would also take biopsy to test for cancer and would laser any endo they felt they could remove. had lap 2 weeks ago to find there was no cyst, fibroids or endo. I didnt get to speak to surgeon after op so I managed to arrange a follow up myself which I went on monday. the procedure ended up being a laparotomy and an unplanned hernia repair (because they failed to read my history of umbilical hernia when was a child). other than this nothing else has been done not even biopsies. so I am back to square one. they have suggested a mirena even though the first registrar said cant have with fibroid history. just dont know what to do now. maybe I have to just accept this is how things have to be. is hard when it affects my family and work too. have had months of worry and although was scared of diagnosis at least it was an answer. what would you suggest?

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9 Replies

  • I am 34 years old

  • Have you thought of having endometrial ablation to help with the heavy periods etc? (Only if you've finished your family, though). It might be worth researching and asking your GP - I would also ask them what they think the next course of action should be, it sounds like there is something wrong, even if endo has been ruled out. I know cycts can go away by themselves - this happened to me before I was diagnosed with endo, but I'm not sure they normally do if they have blood in them.

  • hi. I will look into that thanks. we had thought a few years ago we might ttc again but with all my symptoms i decided it would be selfish if there was something wrong. (I am also being investigated for ms type conditions due to pins and needles/numbness) i must admit i didnt think these types of cysts could just disappear on their own either. with hindsight I wish they had re scanned me beforehand. the only other duggestion they have made is to put me through an induced menopause. dont really like yhe sound of that. surely if it was a hormonal imbalance it would have been picked up on my blood test? how were you diagnosed?

  • I was diagnosed by laparoscopy in February. I'd always had bad periods, often heavy, clots etc similar to yourself. Then I started to get pain the week either side of periods and long story short, finally persuaded my gynae to do the lap - its still the only way to confirm endo. I've had 2 induced menopauses - the injections used are either prostap or zoladex, if you want to research. They are really meant to treat Prostate cancer in men and should only be given for 6 months in your lieftime, as they can thin your bones. It has stopped my pain temporarily, but I'm looking into other treatments now. If I were you, I'd keep on at your GP until you get some answers - its your body and you know if somethings not right!

  • did u suffer side effects from the zoladex injections? I have previously had a suspected blood clot on lung and previous scan showed fibroids (even though they werent seen on the op) so the registrar says this drastically reduces what they can offer.

  • Sorry, for some reason I only just go your reply - I havent been ignoring you! I had some side effects with my 1st course of injections (I had Prostap) - I had some anxiety and depression and also had hot flushes, mood swings and insomnia. The flushes weren't too bad, but everything else was horrible! Because of this, I was given HRT during my 2nd course and that stopped all those side effects, apart from the mood swings - I would lose my temper over the silliest things. I had my last 3-monthly injection in July and can feel it is wearing off now - the endo pains are starting to come back, along with the fatigue. My periods havent come back yet, but I feel as though they could at any time. So, the injections help short term, but are not a permanent fix. There is a long list of possible side effects, so it is vital to do some research on here before making a decision.

  • hi again. I was thinking they are all just temporary measures. not really a long term solution. going have to really think hard about it all. just wish someone could wave a magic wand and make me normal again! I have had to go back today because of having pains, rash, and swelling on my umbilical incision. doctor wanted to admit me but there werent any beds. got to laugh about it otherwise it will drive me mad. appears I now have a haematoma. dr wanted to scan and possibly drain it but registrar said wasnt worth scanning and sent me away with antibiotics. just hope they help. thank you for taking the time to speak to me. its nice to chat with people that understand. x

  • No problem at all - its what this community is for - we may not have the answers, but we can help support each other. As for the magic wand - it would be wonderful if they had one! Just keep pestering your GP and consultants until you get some real answers and treatment options, its really all you can do, just don't give up hope!

  • I will. looks like Im still going to be under gynae for a bit longer now as I ended up back in hospital this morning with a severe internal infection. they dont get rid of me that easily! lol

    thanks again and hope all goes well on your journey x

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