stage 4 endo bowel 100pc worse after Mirena coil

[Ess1982]

Hello everyone, first time poster here I’m going to try and keep it succinct.. I’ve had endo for 15 years. Lived with the pain, had two laps 6 months in zoladax and watch what I eat. Wasn’t really monitored over covid endo got worse. In April suspected cervical cancer (thankfully negative). In august after waiting months for Ct and mri they confirmed E do in bowel. Im super terrified didn’t want to rush into a decision re hysterectomy (which one?!) blue bowel re section. Plus my endometriosis at this point I was coping with. Living with 10 awful days in a month because I am lucky enough to be blessed with an amazing son and I want to be a mum that’s active and in his life. 3 weeks ago on consultant recommendation had Mirena fitted. Ended up in hospital with a pelvic infection. This endo peak pain for 96 hours. Two weeks on and I’ve never felt so low. This disease has now taken my ability to work and be present for my son. I’m in constant agony only relief comes from naproxen and two paracetamol for a few hours then I need to wait until the next dose. I feel like my own body has me hostage. I’ve never felt like this before. Consultant can’t see me now until November. How am I supposed to survive until then? I nearly called an ambulance this morning.. there is only my son me and my husband.. I honestly feel like I won’t survive this.. I also have rheumatoid arthritis so the options for surgery are complicated as removing everything full hysterectomy would put me into a surgical menopause. I’m also terrified of bowel re section stoma bags.. if anyone has any experience Of this surgery and (or not) is also immunesurpressed I’d love to hear from you. Equally anyone with experience of hysterectomy which one did you have? Pain relief to get through the agonising wait,?

thank you so much for reading

[moonghost]

The Mirena coil made my endo (stage 4, bowel adhesions) worse, and made me extremely depressed in a way I could not account for otherwise - I have a lot of experience with depression, and have taken anti-depressants for years, and I can confidently attribute the tears and constant low mood to the Mirena. I had severe menorrhagia and bled for 6 weeks when it was put in, and then for the 5 periods after for weeks at a time. Taking it out was the best thing I could have done. Two weeks after it was out, my dangerous depression lifted and my periods went back to being 5 days long. The only thing I changed after it was out was going gluten free, which helped immensely with pain levels during my period and did more for pain levels than the Mirena ever did.

Your GP can take out the Mirena and can also prescribe stronger painkillers, you don’t need to wait for the consultant.

[Ess1982 in reply to moonghost]

moonghost thank you so much for replying 🙏🏼 I really appreciate it. The Mirena is now out (it’s been 2 weeks). I’m terrified that I won’t return to my ‘normal pain’ that this is ‘it’ my life over from the extreme agony I’m in. I have changed painkillers to 250mg naproxen 3 times a day with paracetamol and the option to double one of those nap doses. I have also been prescribed amitryptaline. Feel like I’m on constant edge. My mind my pain response everything is shattered from experiencing such intense pain hours at a time. It took me three hours to get moving this morning. Do you mind if ask how you’re feeling now? And which pain relief you take ? If any thank you again. Xx

[27gems]

I had the mirena coil twice - once in 20s post surgery then again post surgery in 30s (told it will work much better second time as had children). So, both times I was in Agony - Bleed Non Stop and ended up taking vast amounts of opiate analgesics with pints of wine to try not go to a&e - hated the judgemental looks from staff who thought i was having a period only or was seeking morphine!!!!!

I found the amount of pain and bleeding was so so so much worse after mirena - was told I must give it 6 - 12 months to settle and first time put up with 18 months and felt so depressed contemplated suicide. Was then Really hard to get someone to remove the horrid thing..... once out felt a reduction of pain and bleeding and mood was so much better.

Second time round i was not willing to reach that point - but it was so terrible and i felt so depressed and felt angry and frustrated and simply desperate - did not feel human!!! Was worried i would end up attacking some one as felt so wildly upset and annoyed and low and the pain was resulting in 2 bottles of wine every day.

Same issue again - couldnt get appointment for removal, told it would be MONTHS - so i tried to pull it out myself but too high, then i called them and basically cried hysterically and they removed it.

I looked up Mirena Coils in BRITISH NATIONAL FORMULARY (look up BNF online) and it can make all symptoms worse and should never be given if ever had depression as can make it return / mood severe and suicide! I had childhood depression and post partum depression but at no time was i asked about my mental health history either time.

Ive had 2 friends also react badly to it. I think its a dangerous and terrible medicine/coil.

So analgesia - i have tried them all as had endometriosis since 17 and adenomyosis since 2010 - severe days found Diclofenac Suppository, cocodamol and extra codiene (1mg per kg of patient weight is legally permitted in UK) plus a neuropathic drug and cbd oil and hemp seed oil capsules plus red wine with each meal (No Wheat or Soya).

Drs said Mirena was BEST TREATMENT- it was a nightmare. Also told a contraceptive called Yasmine would help but caused increased pain and severe joint pain to point of not being able to work - so sadly its trying things out and ruling them out.

I now have bowel adhesions and bowel bleeding and need surgery but waiting lists are very long - so with sick leave now loosing job! Joy

[MooBoos1]

II am so glad its not just me that hates the mirena coil, I have tried it twice and had it out within days both times due to the amount of pain and I couldn't stand up straight. I thought it might of been because I have a retracted womb as well as endo but reading you ladies I know its not just me and it really is horrible. My consultant tried to recommend it to me again last week but I refused point blank.

[Ess1982]

thank you for replying MoosBoos. They make it sound like it’s a good fit and such an easy out. I have resisted it for 15 years but I got so desperate I didn’t want my bowel endo to get worse. How wrong could I have been! I even googled positive Mirena stories… wish I’d stayed away from it. Hope you are feeling better now xx

[MoominBabe92]

Hi everyone, I have had so much pelvic pain with mirena iud that they thought it was misplaced. My bleeding completely stopped as did my back pain but my pelvic pain was horrific for two years and is only starting to level out now on year 3. I used to have on and off cramps for 3 weeks out of the month. Cramps and pain after sex. Bowel issues. I have gone up two dress sizes. My hair has thinned out extremely

I warned my old gynaecologist that I feel suicidal before my period and that has kept me off the pill. She pressured me to try the IUD anyway. I have kept with it simply to try and stop progression of endo whilst trying to seek proper care after ten years of no hormonal bc. I am also terrified of getting it out.

I am only starting to feel normal again after 3 years of hell and it needs replaced in less than 2 years...

Don't even get me started on insertion and the trauma I still hold from that! I haven't had kids and clamp up when in pain. I want it removed but I will only do it sedated.

Some people have a great time on it and it just doesn't suit others, but the horror stories stick out. It's absolutely tragic that it is one of the few available treatments.

My mental health is absolutely wrecked as are my relationships, any that are left. I've also recently been laid off, no relationship to endo but the stress of my MH and IUD pain combined with a high stress job has completely burnt me out emotionally and physically. Endo and hormones directly affect mental health and its a disgrace how it is overlooked during care!!

[MoominBabe92 in reply to MoominBabe92]

Also regarding the bowels, the gynaecologist at the time told me the hormones in the IUD can slow down your bowels and make bowel issues worse! The same can be said of many hormonal contraceptives and its something that is rarely mentioned !!