Pelvic pain

i have recently been diagnosed with endometriosis. My gynocologist suggested a merina coil to reduce the symptoms. I have researched this amongst my friends and have had terrible reviews, so I have decided not to go down that line. I am asking if anyone else has this condition and if the suffer with the pelvic pain constantly through the month instead of just during their period?

Sue x

8 Replies

  • I have chronic back pain from various sources. I found it got worse with my periods. My periods were flooding and the cramping was getting increasingly worse, to almost the same level as birthing pains.

    One thing that took away 40% of my back pain was the depo injection. It took about 6 months to settle. It stopped my periods completely. I did put on a bit of weight, but that was a small price to pay to to be period free and in alot less pain. I did loose the extra weight later on.

    Apparently fluctuations in hormone levels throughout the month caused my pelvic joints to loosen (normal occurrance) more than normal which increased my back pain and instability in the pelvis.

    I was on it for 5 years before the menopause. Apparently I had been having mood swings which stopped as well. How did I know the menopause had happened? I stopped craving chocolate and carbs! So I stopped and it took a couple of months of spotting before it finally stopped.

    From what I understand of endometriosis, it's the lining of the womb that's affected, so if you stop it from bleeding every month, it should reduce the pain. You do need to give the depo about a year to completely settle, so don't be disheartened if things take a while to settle.

    If this is not for you, I hope you find something.

  • Hi Sue,

    I suffer with constant chronic pelvic pain throughout the month, it's always stronger during my cycle.

    I was advised at my last operation 2 weeks ago to try the mirena coil before any more surgery. I suffer enough during the month and the thought of more pain if my body doesn't accept the coil scares me slightly.

    I take morphine on a daily basis and have done for the past 11 months due to the severity. I made it clear to my GP and specialist that I will not be entertaining the idea of a coil, they have now pushed a referral through to another specialist, I have an appointment at a different hospital with another consultant for 5 weeks time.

    Be persistent and stand your ground, it's your body and your treatment. They can advise but you have the ultimate say in what happens.

    Sarah x

  • I had my first laparoscopy to remove the endometriosis about 6 weeks ago. Unfortunately it seems it wasn't successful.

    I have pain on and off all throughout the month. Although it gets much much worse around my period.

    I was recommended to take the pill back to back for three months at a time and then allow the period. I struggle with that, I get so bloated and uncomfortable by month 2.

    I'm hoping the doctor will be able to suggest something else next time I see them. It's not a nice way to live :-(

  • I was there, 26 years ago. Diagnosed with endometriosis, laparoscopic "removals" Lupron depot for months, no help. I was eventually told by a specialist I didn't have it and so I researched more to find that I had pelvic congestion. Make sure doctors aren't missing something. If your pain gets worse throughout the day, better in the morning when you get out of bed, look into pelvic congestion.

  • I've read a bit about pelvic congestion. I thought it was only common for women who had been pregnant? Which I haven't so I ruled it out.

    I have noticed that the pain gets worse if I've been running /walking for a long period of time. Is that a symptom?

  • What is this merina coil? Things have changed since my endometriosis diagnosis oh so many years ago.

  • In my experience it was anything that was active: standing, walking, sitting, housework... but if I'd lay down and and have my feet up for awhile and when I woke in the morning the pain was significantly less. I don't know anything about congestion being a problem for women who've given birth only. My interventional radiologist said it had to have been going on a very long time... years. And at the time my kids were really young, the oldest 6. So with that info I'd think it's certainly possible for someone who's never had children.

    How about just standing? Or going about your regular day? By afternoon or evening do you notice an increase?

  • Hi I would at least give the mirena coil a try as everyone is different. I asked for a mirena to be fitted during my first surgery for stage 4 endo( diagnosed by ultrasound due to massive chocolate cysts)but they didn't do it as said I was too small. I tried the pill but it made the endo worse and still bled with it taking whilst using it non stop. Zoladex was horrible, no sleep, terrible depression, hot flushes etc.The mini pill did nothing. They fitted me with a mirena during my second surgery when I insisted on trying it,yes it was painful for 6 months but after that so much better. Pre mirena I used to get pain for 2 weeks from ovulation to period and was so bad I used to faint and throw up non stop during my period. Adhesions and endo can be painful all the time. The mirena improved my pain massively and without it I think I would have lost my job and had to go through an unwanted hysterectomy. The only problem I find with the coil is that it stops working properly after 18 months to 2 yrs and I start getting light periods spot bleeding and severe period pain. I spoke to a leading endo researcher at the recent world pelvic pain conference in Nice re this. The coil releases progesterone and the amount released slows as the coil gets older which seems to me to explain why It stops working for some severe endo sufferers after 18 months to 3 yrs. I just get mine changed when it stops working although I have a battle doing this.I am so thankful that I stood my ground and refused GNRH and hysterectomy as I was diagnosed with severe spinal osteoarthritis 3 yrs ago caused by a spinal birth defect and as GNRH and early menopause thin the bones I dread to think how much worst the osteoarthritis would be now if I had caved in to the doctors advice. Also re your friends I think the views on mirena are different depending on whether you use it for endo and pelvic pain or contraception, I don't think I would use it for contraception but wouldn't be without for treating endo. I think everything is worth a try before considering undergoing major surgery (ietotal hysterectomy)which still has no guarantee of curing your pain and can cause other health problems in later life. Hope this helps as I know how horrible it is being in dire pain all the time as I now have chronic back pain due to osteoarthritis. Julia

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