No periods but all the pain, looking

[ginandgin]

Hello, This is my first post, hopefully I have put it in the right place. Apologies in advance for the rambling but I've never written all this down before.

I have a very long history of heavy and painful periods.

I have the Mirena coil and whilst it's great in that it has stopped my periods (not one since being put in) I still have horrendous period pain. It is always on the left side and worse pain than I used to get with the bleeding. Ibuprofen makes no difference.

I have had two laparoscopys as docs thought there was no question I had endometriosis given to my symptoms, but none was found.

I am so confused because all of the things I have read about painful periods talk about stopping the bleeding as if that would automatically stop the pain so I do not understand how I can be in this much pain with no period. I have seen 3 consultants (including a bowel specialist to rule that out) and they are now suggesting inducing the menopause. They have also mentioned something called adenomyosis which would not have been seen during surgery and which is apparently v hard to diagnose. Part of me is relieved to have an answer as I cannot believe that the pain I am experiencing is for no reason. One consultant told me that "some people just have pain". There are days when I can't put my trousers on because the bloating is so bad and my stomach is so tender to touch.

I'm still young although I am very definitely not considering anymore children, I am worried about the effect this might have on my relationship - if the medication works then I'm looking at a hysterectomy. I have a very supportive husband who i can talk to but I'd really like to hear from people who might have had a similar experience -
Long term period pain or chemical menopause or an early hysterectomy?
Thanks for reading.

I'm sorry to hear that you have been suffering like this for a long time.

Ultimately, you need a diagnosis that will then enable you to be on the right path for some sort of response or treatment. Adenoymsis is difficult to diagnose, but characteristics of it can be picked up by MRI and sometimes on a transvaginal ultrasound. The chemical menopause (GnRh agonist injections) cause a "false" menopause - in the sense that it is reversible. There's only so many times that it can be used but can provide some respite. There are other complications to hysterectomy (even ovary sparing hysterectomy) such as pelvic organ prolapse, but all these decisions need to be against how much you are suffering, the diagnosis or the likely diagnosis and in turn what your HCP's expectations of the treatment are.

I haven't had the same experience as you, but I have just undergone considerable bowel and pelvic organ surgery, but had a very long and difficult diagnosis process. A lot of the hurdles I felt I had to overcome were getting across to my surgeon just how truly debilitating my symptoms were and how they were interfering with my life. I'm a HCP myself and feeling like I was being listened to was still quite difficult.

This is a very good site with lots of info: www.pelvicpain.org.au/

Thank you both for your replies.

The drug they're suggesting is a nasal spray called Synarel alongside HRT. It does scare me but what you say about weighing up how much the symptoms affect my life is so true. I have days where I can't function at all, and yet the next day I can be completely fine. I can go weeks without any pain or I'll have 2 weeks with no let up.

I actually feel as if I have been listened to during the process. Recently I have used insurance to see a consultant privately but that isn't because I was unhappy with my care, simply because it was available. when the first consultant suggested the menopause drugs I thought it sounded ridiculously over the top and that I'm way too young. Having had a terrible few months of pain though and with another doctor giving me the same conclusion, I feel I'd do anything to get out of this situation.

I will have a look at the link, thank you.

I am 31 and recently had a hysterectomy. Family complete. Ovaries left. I still get period pain each month though. had keyhole surgery. Back home two days afterwards. The emotional impact is not to be underestimated. Wouldn't have had more children as I have several but some days it just hits me like a ton of bricks that I am so young and I can't. It hurts deeply. Don't miss the flooding and agonising pain though. X