Longtime Endometriosis Sufferer...Help!

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Hi all. I was diagnosed with endometriosis in 2009 following an emergency cystectomy of what the surgeon determined was an endometrial ("chocolate") cyst growing from my left ovary. Prior to diagnosis I had no symptoms that indicated something was off about my reproductive area--I had somewhat heavy periods throughout my teens but nothing too out of the ordinary; never anything close to the horrible pain that most endometriosis sufferers have to deal with. A tendnecy toward developing ovarian cysts is my only major symptom.

Since being diagnosed, my gynecologist has stressed the importance of regulating my reproductive system with hormonal birth control. Although there are still some unknowns about endometriosis, it is linked to hormone levels and my doctor explained that the best course of treatment in young women who have not yet had and want the option of children is a regimen of hormonal birth control. I certainly don't want another surgery for another cyst, so I've been on some form of hormone treatment since 2009.

My problem is that I am very sensitve to medication and therefore susceptible to side effects common to birth control, particularly anxiety and depression. My other limitation is a heart condition diagnosed in my early childhood that makes me predisposed to higher blood pressure. Because of the potential danger of being on a standard 35 microgram combination pill, my choices are only among low-dose estrogen perscriptions. I've cycled through probably five or six low-dose varieties and have not yet found one that fits my body chemistry: most trigger depression or wild mood swings and I feel out of control of my emotional state. The perscription that's worked best thus far is my current BC, NuvaRing, which provides only 15 micrograms of estrogen a day. But even at this low low dosage, I'm still having side effecs like constant spotting, bloating, and some emotional instability, though not as severe as my previous experience.

My inquiry is this: Has anyone else here been similarly susceptible to birth control side effects, but had to be on BC as treatment for endometriosis? Did you find a low dose perscription that worked well for you? Can anyone suggest other treatments like dietary restrictions or herbal supplements that have worked, either alone or in combination with other treatments? The NuvaRing is the best option I've tried, but it's far from perfect. I'm beginning to seriously worry that I won't find a treatment that works for my endometriosis yet allows me to feel normal. sad Any advice or suggestions welcome. Thank you.

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  • Posted

    Please disregard smilie face at the top of the page; that should be " ).
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  • Posted

    Hi I have read your post and I suffered

    Many years with this condition and

    I understand how painful it can be at

    Times. I did have a hysterectomy in the

    End after having my children.

    I did have a marina coil for a number of years

    And this did seem to keep it at bay

    As I could not manage well with

    Hormone treatment or the pill

    It was a little uncomfortable to have it


    I hope you find a solution soon

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  • Posted

    Hello - like you I never had any symptoms or warnings I might have endometriosis until I developed a chocolate cyst that caused extreme pain. When I had it removed they found extensive endometriosis so I had to have 6 months of hormone injections and another laparoscopy. My surgeon said that the Mirena Coil was the best way of keeping the endometriosis at bay because it releases hormones locally rather than throughout the body like the pill. Have you been offered it? It takes a while to settle down and I only had mine fitted during surgery 6 weeks ago so am suffering some side effects. It can take up to 4 months to settle but I know other women who swear by it after that. I already suffer with depression before all this started so I am on medication for it but it hasn't so far been exaccerbated by the coil. It's worth asking your GP or your gynacologist if this could be a better treatment for you.

    All the best and I hope you find the right solution for you. (also if you want to try for a baby you can get the coil removed and your body is fertile straight away you don't have to wait months for your system to regulate itself again).

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    • Posted

      I have thought about it, but Mirena makes me nervous because I've previously tried the progestogen-only pill (minipill) and had bad depressive side effects. However, because the progestogen was in pill form, it traveled through my blood. My current treatment is the NuvaRing which delivers low doses of both progestogen and estrogen vaginally to the uterus, and I've had fewer and less severe side effects using this method. I think Mirena could work, depending on how low the progestogen dose is. I've read that some progestogen does end up in the bloodstream, but the majority of the hormore is contained to the uterus. I'll talk to my doctor about this option--thank you!
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