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[Poll] Experiences of PWME taking the contraceptive pill

Discussion in 'General ME/CFS discussion' started by Sarah94, Aug 8, 2022.

?

What was your experience on the contraceptive pill?

  1. Made my fatigue worse

    0 vote(s)
    0.0%
  2. Did not make my fatigue worse

    10 vote(s)
    71.4%
  3. Made me (more) anxious

    0 vote(s)
    0.0%
  4. Did not make me (more) anxious

    9 vote(s)
    64.3%
  5. Made me (more) depressed

    2 vote(s)
    14.3%
  6. Did not make me (more) depressed

    8 vote(s)
    57.1%
  7. Not voting, want to see results

    4 vote(s)
    28.6%
  8. Made my sleep worse

    0 vote(s)
    0.0%
  9. Did NOT make my sleep worse

    9 vote(s)
    64.3%
Multiple votes are allowed.
  1. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,514
    Location:
    UK
    Hello

    I’m thinking of asking my GP for the contraceptive pill (the “combined pill” which contains both oestrogen and progesterone) as I’m struggling with painful periods.

    I don’t want to be on it long term, as I’m worried about the risks of clots and breast cancer (though to be fair it does reduce your risk of some other cancers), but I’d like to just have a couple of months without periods to give myself a break.

    But I’m wondering if people have found it makes their fatigue worse? Or gives them depression or anxiety / makes existing anxiety worse? Or negatively affected their sleep?

    Thanks
     
    Last edited: Aug 8, 2022
    Snow Leopard, Ravn, Ariel and 3 others like this.
  2. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    443
    Hi @Sarah94

    I am currently receiving treatment to address various issues, including painful and abnormally heavy periods, which started early on in my illness.

    I haven't had a period since beginning my treatment, so I cannot comment yet on its effectiveness on periods. Still, I have seen an incredible improvement with several other symptoms, as advised by my doctor.

    I take bio-identical progesterone only. It works to rebalance the overdominance of oestrogen, which in my case was investigated as being part of the reasons for my symptoms, including painful and very heavy periods (Menorrhagia).

    Progesterone also addresses depression and anxiety, improves sleep and can reduce fatigue.

    I will post after my next menstruation to comment on the overall effectiveness and detail all the over symptom improvements I am experiencing.

    I can give more info via PM if you want to know more before I post my full account.
     
    Last edited: Aug 8, 2022
    bobbler, Ravn, Wits_End and 3 others like this.
  3. Braganca

    Braganca Senior Member (Voting Rights)

    Messages:
    210
    My sister went on pill for a year to treat fibroids at age 43. She developed breast cancer after a year and totally regretted going on the pill as she felt it must have contributed. Impossible to say but I wouldn’t take an oestrogen pill myself.
     
    Ravn, DokaGirl, Mariaba and 2 others like this.
  4. Leila

    Leila Senior Member (Voting Rights)

    Messages:
    1,122
    I have sever endometriosis so the pill is a life saver for me.

    Ever coming down with ME my periods became unbearable but also ovulation made me lay in bed sick for days with flu like symptoms on top of the usual ME ones.

    I guess ME and Endo form a nasty alliance.The pill ended my night sweats and joint pain and those ovulation crashes. I take it every single day without period breaks ever to suppress any kind of internal bleeding.

    It *did* make me depressed for the first 2-3 months and also very nauseas. I had to put my feet and legs in cold water to suppress dry heaving for weeks. I cried a lot.

    Since I had no choice I endured it and it got better over time. I don't have immediate side effects any more.

    So if having a period/cycle is too much of an exertion I think the pill is worth a try and depending on what the doctors say you might even be able to take it without period breaks in between.

    My overall experience is: A lot less pain, better sleep, self limiting depression and nausea.

    Edit clarification
     
    Arnie Pye, Ravn, DokaGirl and 6 others like this.
  5. Leila

    Leila Senior Member (Voting Rights)

    Messages:
    1,122
    Taking a mini pill might have less side effects.

    On the other hand, estrogen is important for the bones and pwME due to inactivity already are at risk for osteoporosis.
     
    Rain, Ravn, DokaGirl and 1 other person like this.
  6. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    754
    Shortly after the acute viral illness that started ME I began to feel nauseous and often vomit after taking contraceptive pills. This has never been a problem previously. Even when taken with food and at different times of the day the nausea remained.
    I don't notice any difference to ME with / without contraceptive pills.
     
    Ravn, DokaGirl, livinglighter and 3 others like this.
  7. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    2,997
    i take progesterone only pill (desogesterel), started 10yrs after ME onset to control endometrial hyperplasia. It may no difference to my ME whatsoever, no noticeable difference anyway. Bot of course that not the cmbined pil soo may not be relevant.
     
    Ravn, Ariel, DokaGirl and 2 others like this.
  8. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,514
    Location:
    UK
    Although this poll didn’t get many respondents, I posted a similar poll in a severe ME Facebook group, and got results that some people had had those side effects but most haven’t. So I’m going to give it a go.

    My usual GP, whom I like, isn’t available til September, so I’m booked for Monday with a female GP whom I haven’t seen before. Bit nervous about what she will be like.

    I’ve also now got my (first ever) cervical smear test booked for Tuesday. More nervous about that! I’m hoping that it will be with the same nurse that I’ve seen a few times recently (she’s been helping me with eczema issues) as I have a good relationship with her.
     
    bobbler, Ravn, Missense and 1 other person like this.
  9. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,514
    Location:
    UK
    At least, if the doctor doesn’t believe me that I’m in pain, I can just go to a local sexual health clinic instead and ask them for contraception.
     
    Ravn, Missense and Trish like this.
  10. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    1,804
    Location:
    Aotearoa New Zealand
    Bit late to the party, but for what it's worth, I was on the combined pill and later on the mini-pill for a while. My ME was very mild at the time.

    Neither pill had any effect on any ME symptoms including fatigue and sleep. I've never had anxiety or depression and the pill didn't change that either.

    On the combination pill I did get some other hormone-related symptoms quite similar to what I used to get for a few days premenstrual though mercifully without the thumping headache, only on the combined pill I had them all the time. That's why I switched to the mini-pill which was better and still reduced heavy bleeding quite well.

    Hope this helps a little.
     
  11. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,514
    Location:
    UK
    New GP seemed pleasant (although I still prefer my usual one, who’s away currently ). Prescribed me the mini pill (progestogen-only) - apparently the combined one is a little bit risky with my weight. (She didn't make a big deal about my weight at all though, I didn't feel shamed for it or anything). And referring me for a scan to check for fibroids/endometriosis etc.

    so I’m happy with that. Just a bit nervous about starting the pill and what side effects it might have, but I’ll just have to take the plunge.
     
  12. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,514
    Location:
    UK
    Cervical screening went fine. For me it didn’t feel much different to inserting a pessary (which I do quite often as I keep getting thrush). The nurse said my cervix was really easy to get to - a rare moment of my body doing something well!
     
    bobbler, JemPD, Simbindi and 4 others like this.
  13. Trish

    Trish Moderator Staff Member

    Messages:
    44,448
    Location:
    UK
    Good to hear it all went well, Sarah94. I hope the pills help.
     
    bobbler, Mij, Simbindi and 3 others like this.
  14. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,514
    Location:
    UK
    Just been reading up about the effects of progesterone on your body, and apparently it might even help me sleep better.

    On the other hand it may mean that I’ll get more acne breakouts, might make me want to eat more, and might cause constipation.

    Apparently the evidence suggest that the progesterone-only pill doesn’t have a link to depression (unlike the combined pill).
     
  15. Rain

    Rain Senior Member (Voting Rights)

    Messages:
    175
    I prefer 2,5mg norethisterone that also removes ovulation, not just periods. It is registered for short time use, but many endometriosis specialists use it long term. No side effect, but I do generally tolerate hormones well.
     
    Simbindi, Sarah94 and Trish like this.
  16. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    2,568
    I hope it works out for you! Little else to contribute to the thread as I don't use the pill.
     
    Simbindi, Sarah94 and Trish like this.
  17. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    443
    Interesting, Sarah. I have a long history of the same, so much so that it's been agreed to check if I'm immune compromised. I have a few other red flags, such as a lifelong history of low neutrophils.
     
    Last edited: Aug 17, 2022
    bobbler, Sarah94 and Simbindi like this.
  18. Wits_End

    Wits_End Senior Member (Voting Rights)

    Messages:
    1,194
    Location:
    UK London
    Really? I didn't know that. I thought it was restricted to 10 days, and then only for what you might call exceptional circumstances rather than regular use?
     
    Rain likes this.
  19. Rain

    Rain Senior Member (Voting Rights)

    Messages:
    175
    I have even changed gynos (and seen a internist) during the years of being on it, have not been met with any raised eyebrows. I’ve been advised to stay on it until we are certain that I have crossed menopause. But as norethisterone suppress FSH/LH, it is hard to say exactly when.
     

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