How many of you ladies have been through this? What was the outcome?

Hi. I've posted here before, I had endometrial ablation 16 months ago for severe heavy bleeding/clots 15+ days a month. I've had 2 laparoscopy's since. 1st was negative, 2nd found endo. Had adhesions removed from pelvic wall and ligaments. I've been in worse pain since March (last lap date) I've been admitted to hospital twice monthly since (When I'm ovulating and when my period starts).I live on tramadol & oramorph. I was started on prostap injections Tuesday, they think I may have adenomyosis too, as well as a heammoragic cyst on my left ovary that has now got so big I can feel it. I have an emergency appointment Monday with my surgeon, how many of you ladies have had similar? What questions should I be asking? Thanks in advance xxx

5 Replies

  • Hi hun.

    I'm really sorry to hear that you are suffering from such pain.

    I had my first laparoscopy in March also I was diagnosed with Endometriosis and Adenomyosis, my endometriosis was mostly on my uterosacral ligaments and the pouch of douglas, I was told told this was all successfully removed bit the Adenomyosis is most likely causing my pain if it wasn't resolved after the laparoscopy.

    The laparoscopy didn't remove any of my pain I could literally feel after i camera round after the laparoscopy that my pain was still in the same place, left pain in pelvis, hip and back and down left leg.

    I have recently spent 11 days in hospital because I'm in so much pain, I am taking oramorph daily, the have taken Tramadol away as it just isn't helping anymore.

    I am expecting I will be back in soon as my vaginal wall has prolapsed and in struggling to pass urine properly at the moment, pretty fed up😧

    They want me to have prostap injections I'm so scared I'm going to get another load of side effects aswell as what is already going on, let me know how that goes for you.

    I also feel like my ovulation pain is more intense that it was before, my period is always horrendous pain it starts around a week before my period and stays for the duration, I can't honestly remember the latest time I had no pain .

    I hope this helps you by knowing that you are not the only one having to endure this horribe disease.

    Jo xx

  • Hi Jo glad to hear you're out of hospital but sorry you're still in so much pain 😞. Hi Vikki sorry to hear you're suffering too what both these diseases do to our bodies is horrible. I'm on prostap and have been for 12 months now, just like you two, I was petrified about going on it and at first refused it, but I can honestly say its been a godsend. Prostap has reduced my pain up to 80%. Yes there are side effects as with any medication but they are nothing in comparison to the pain I was in, so my advice is to give it a try if you don't like it then stop it as it's your bodies. Hopefully I will be able to stop soon as my surgeon is planning surgery and then maybe I can start to feel like me again. Good luck 🍀 to both of you and take care Rachel xx

  • Thanks for replying.

    I am really pleased to hear that the prostap is working well for you.

    I have from alot of ladies that it has made them feel worse and that terrifies me because the pain I'm in every day is so bad I really don't know how much longer I can bear it, I know that sounds like I am being a drama queen lol bit living your life on morphine and still feeling so much pain is taking its ttoll on my body and mind.

    They have said if I have the 3 months injection and it doesn't agree then that's fine I can stop them.

    I just pray that it will take this pain away I really do.

    I just wanted them to do a hysterectomy because of the pain but they advised to have injection to see how much relief I get as this indicates if hysterectomy will work I believe

    I'm so pleased that it has brought you some relief from the pain hun.

    Good luck for your next surgery hun, thanks so much xx

  • U need to find out if full excision was done. If not find a consultant that is full trained in excision in the UK and ask to be treated by them. It is the only way to remove it. I have just had excision.

  • I had two cysts the size of grapefruits...I understand completely how that feels. Ask them to check for other cysts and endo. I was bleeding the whole month and I was popping heavy pain pills like candy. My gyno did what he called a "reset." He took me off everything. All my meds and hormones stopped. After three months he put me on danazol, which honestly....I did not hurt on AT ALL. It was awesome....except for the hair loss, acne, muscle aches, mood swings, and weight gain... but NO pain. You can't take danazol for too long, so I had to stop recently. Less than two weeks later the pain is back. He says lose weight. Yeah...ok. Like I haven't tried that on my own. But he says a significant weight loss would make a huge difference. I don't know if you have the weight issue that usually comes with these issues, but if you do, he says that is the answer. I'm looking into having weight loss surgery done sometime this year to try to see if that makes a difference. If not, at least I've solved some of the weight issues right?

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