Need advice for endo symptoms

Hi, newbie here, I've had awful pains with my periods, bleeding so heavy there was a point when I couldn't stay conscious due to blood loss, etc, and I've been persistently going to the doctor and trying to get it sorted. Ive been on several versions of the pill and the implant as well, none have worked for me. After 6 years of trying to get an answer, they now believe it's endometriosis, but have said that tgey didn't want to give me the laparoscopy unless absolutely necessary, and put me on Cilest (their reason was I have an active, physical job but only work part time so no SSP and 3 weeks off work would be kinda bad). Problem is I've been on it 5 months now and just keep bleeding, all old blood till I do a withdrawal week. I've just come off one of those weeks, and my pain has gone from acute (only at time of the month) to chronic, and I don't think I can deal with this right now. My parents have said they will pay for me to have surgery privately if needs be, but I just wondered if anyone else has been in a similar situation? I just feel really overwhelmed, sorry for the ramble xx

5 Replies

  • Hi hun. I'm so sorry for the suffering you have endured. My pain also became chronic and I had to keep pushing (still are) and I eventually had two laps.

    They ARE necessary. If is endo, it will only worsen; which seems like it has already due to becoming chronic. Please push to be referred back to the gynaecological doctor or keep pushing for a laparascopy.

    I hope they find the correct treatment for you and I wish you all the best. God bless xoxo

  • Thank you for the advice lovely, hope all goes well with you too! Xx

  • Bit of a catch 22 with laparoscopy as every time you have surgery it provides fresh sites for endo to attach to but without it you don't know for sure if you have it. I would push for one where they will treat at the same time with excision as regrowth is meant to be slower than with laser. Having had for 30 years and treatments have changed in that time I'd say don't give up hope. I have 3 children and not so much pain now, far better than in teens and twenties - I have had most symptoms you will read about but they have come and gone over the years, I know I'm full of endo and adhesions but I can live a relatively normal life as long as I rest when I have period and eat well. I have found homeopathy, acupuncture and hypnotherapy enormously helpful over the years, might be a helpful add on to what allopathic medicine can offer you..

  • Thank you for the advice, I will definitely push for the excision, especially as I have recently started getting a pulling pain on my ovaries and bladder, so that's not the best of signs for me. I'll definitely try the alternative therapies, couldn't hurt to try!

  • Ibuprofen should help. From what I've been advised, even if it doesn't make the pain go away, it helps with any inflammation that can cause pain and other problems like adhesions getting worse. In my case, the inflammation can agitate ovarian cysts and put them at higher risk of rupturing, so they're mostly for prevention.

    They did write down that they believe it's endometriosis in your records, right? Make sure they do and that you have a copy of that for the future. I refer to the operative report that diagnosed my endometriosis as though it were some kind of holy scripture, mostly because the idea of medical practice is to be skeptical and new or other doctors may question what other doctors have had to say about the patients.

    I'm sorry that I don't know what to recommend for the excess bleeding. I have a similar problem and have found that consuming something with sugar right as the bleeding starts helps to keep me stable. My gynecologists have said that blood pressure and blood sugar can drop during the start of a cycle and to react accordingly. Be sure to stay hydrated too and drink plenty of water and cut back on coffees and sodas, at least when you're experiencing the heavy bleeding.

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