I’m sorry for ranting. I’m just reaching my wits end today!! Had my coil put in when I had my surgery about 6 weeks ago. The first two weeks were utter hell, I was in A&E because the cramps were worse than I have ever had them. They then settled down after a couple of weeks.
Now I am starting to have them all over again!! I’ve tried painkillers, hot water bottle, yoga, a swim, listening to greensleeves while i poop (sorry tmi) and absolutely nothing is helping. I work as a paramedic so taking time off of work to go to the docs is something I have to plan quite far in advance. My employer is incredible and totally understanding but I know me taking a day off will make finding me a replacement quite difficult!
Does anyone have ANY advice at all, I’m on the verge of tears!
Hope you’re all well, stay safe ❤️
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EvelynSands
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Sorry to hear your in so much pain, are you due to see your consultant again soon? Or have your spoken with your gp again about the pain?
I feel for you as I’m in the same situation with pain not many pain killers do much for me and hot water bottles don’t do much either, did they say anything in a and e when you went?
Thanks love. I’m going to try and get an appt Monday with the GP because they haven’t done any follow up with me in regards to my surgery or my diagnosis.
A&E were lovely, but when they spoke to my gynae department the guy basically told them to leave the coil in because I hadn’t had it in long enough for them to consider removing it. I’m actually at my wits end now, I want it out!
That’s odd you normally have a follow up appointment with them, double check with your gp ☺️ I had the coil years ago didn’t suit me so had it in for 3 months then had it out, I had a flare up few months back rang 111 saw out of hours gp sent me to hospital was kept in for a week but gyne said I was to go on zodalex injections as they think my endo has come back as surgery was nearly 2 years ago now it’s ongoing,if the pain is really bad see someone before Monday x
I think Amitriptyline has worked a bit, had a couple of days of only two and couldn’t sleep well due to pain. Surgery had missed my request, doubled up last night, bit better today. These were through pain consultant. I have sort of changed my mind about Zoladex and that it may actually have been doing more than I thought.
Good luck with GP, try not to be too hard on yourself. You’d chosen that path as you care about others, just don’t forget yourself 🙂
They would find someone to cover, they have to have back up plans, even if it’s just to show CQC 🤣
Sorry to hear you’re in so much pain with it! Totally understand as I had a similar situation. Left mine in for 3 months and I couldn’t bear it any longer so had it removed. I too was in tears a lot with the pain. My gyne was very understanding said some ladies just don’t get on well with them and suggested I try again after having a child (apparently natural birth leaves your cervix a little dilated so it’s more comfortable for the coil) ... I’m yet to try it again but it was a relief to have it taken out.
If you want to keep it in could you try taking a hot water bottle round with you to help with the cramps? I was also told
To take buscopan it didn’t really help me a lot but it may help you xxx
Why don’t you try the depo prevera injection as it’s every 3 months and it’s a contraceptive that works for me as I hate the pill and I couldn’t manage getting the coil as it was to painful
First off, you’re going to get through this. It’s just a small blip in your time line. It sucks you’re in so much pain but there are things you can do to help yourself. I have 17 chronic conditions (stage 4 recto vaginal Endometriosis, adenomyosis and fibroids being my gyn conditions) so I’ve learned a lot of coping skills over the years.
For starters, the more you’re stressed the more your body will become inflamed. Try and do what you can to keep as stress free as possible. Before bed try to write down 3 things that you’re grateful for and put it on a post it where it’s the first thing you see in the morning (I put it on my bathroom mirror). It helps to reframe your brain for stress and focuses on the positive.
I had the coil inserted in February during my lap and it’s been hell. Only in the last 2 weeks I haven’t had cramps (7.5 months later). I’ve been having bad cramps 3-4 times a week since. Try and do what you can to give it time to settle (they say 3-6 months is the typical). If you can’t stand it I highly recommend finding a different birth control until you are ready to conceive. If you don’t stay on some type your body continues to produce tons of estrogen which is what Endo feeds on. The more you allow it free roam the more it grows and gets worse. It’s super important to stay on something as you can only have so many laps before they say they can’t because it inherently causes scar tissue and over time it becomes more and more scar tissue and higher risk of Endo growing on the scar tissue.
Another reason to get it in check with hormone medication is that it can lead to central sensitization which makes every touch feel like pain (when it should be pleasure). When this happens and you still don’t get things figured out, you can end up with fibromyalgia. It is the worst condition I have as far as daily pain goes. This is worst case and takes time to happen.
For now look at your diet. Sugar, wheat/gluten, and dairy are the main triggers for inflammation in the body. When you already have inflammation from the Endo you end up causing even more. Try to reduce the amount of processed foods and eat as organic as you can. This is not an overnight fix, it will take months for your insides to heal.
Try and research for a pelvic (Endo specialist is even better) physiotherapist. They specialize in how to reduce pain, strengthen muscles, help with incontinence, penetration pain, etc. They will give you exercises that are tailored to your issues.
Have you tried a heating pad instead of a hot water bottle? I find they work 10x better than a hot water bottle. Baths help me a lot for pain. Add 2 cups of Epsom salt (magnesium) to your bath and soak for at least 20 mins. Something else you may want to look at is magnesium supplements (I take 400 mg at night). They help with easing cramping throughout the body.
Sending you much love. Be kind to yourself and know that you’re doing your best. 💕
Just jumping in to say I found your reply very warming and mirroring my own journey.
I also ended up developing fibromyalgia and then M.E/CFS.Central sensitisation is agonising.But mine developed after a couple of hormone treatments which I had a lot of difficulties with.But i cannot directly prove it was,just that fibromyalgia symptoms started on Deceptyl and only got worse and never reversed itself.Eventually got diagnosed in 2012.Im at a cross roads with hormone treatment as I’m terrified it will make my other illness worse or cause other irreversible damage.Im not new to them,but I’ve not had any in 10yrs.Im one of a few in my family that has weird chemical sensitivities but that’s another story
I also have Adenomyosis along with other illness’s.24 years of it.
Wow,17..I feel for you truly.There seems to be more Endo sufferers develop co-morbidities or already have prior illness to Endo then develop other conditions.Its quite complex and overwhelming trying to understand.
You’re absolutely right,you learn to listen and watch your bodily changes carefully and develop coping strategies for alsorts of stages/symptoms and scenarios.Its a hard,up hill battle but I feel it’s imperative to take these steps.Living a simplistic,happy,calm existence is the only journey to strive for.Any slight bit of outsider stress annihilates me and it’s scary the way my body shuts down.
I learned to mourn my old self,and focus on living with self love and to always put my health first.I find the most simple things fulfilling.
Excellent advice and I hope more ladies see this and try them.I do.
Sending you tons of healing vibes
Apologies to Evelyn for hjacking lol I just felt compelled to write as your post warmed my heart solidifying never to give up the strong fight.Daily living is so so hard when you have co-morbiditie
I’m so sorry this is happening to you! I also had a bad reaction to my coil. It did get better after a few months (but my cramps weren’t as bad as yours I don’t think), and I got about 18 months of lighter periods and pain relief before the cramps came back. Have you had your strings checked to make sure that the coil is in place and that the strings are the right length for you? That’s the easiest check. You could also consider getting an ultrasound to check that the placement is correct.
Other than that, vaginal benzodiazepines helped with my coil cramps for a while if you can find a doc to prescribe them (asking for a very small quantity at first is the smartest way to go) and I additionally got an Ovira TENS unit that helps block pelvic pain ( Ovira.com ) in a more wearable fashion without medication. You could also try cramp bark tea or supplements - Wise Woman Herbals and Vitanica make good supplements that you can buy online without a prescription. It’s all really trial and error, which can be frustrating. I’m so sorry again that you’re going through this. In the end I had my coil removed but I’m grateful for the 18 good months I had.
Hi Evelyn,Sorry to hear you’re struggling and rant away-that’s what we are here for.
It’s sounds like you’ve had a really rough time regarding your recent surgery.Hope it gets better in the coming months.
What pain medication has your GP or specialist given you?
I had an awful time with working two jobs and studying I couldn’t imagine the intensity of working as a paramedic while suffering.Its great that they understand your illness tho.
Maybe you could get a phone appt?My GP services (due to covid)offers a webcam app consultation.Maybe yours does too?
Would your employer be willing to allow you to answer the call?Also,I’m sure if you mentioned it to your surgery about your position that they could give you a actual designated phone appt time instead of waiting by the phone?
You never know,it’s worth asking
I tried every which way to keep going and carry on working.Until my health force me to stop,you really do need to listen to the body.
It wasn’t until I got referred to a pain specialist that they prescribed me oramorph,tramadol just wasn’t cutting it and I’d tried tons of other meds - I would just end up in A&E monthly.Reluctantly became a frequent visitor.
It’s very traumatic when you suffer excruciating pain with Endo,especially with Adenomyosis.
I still don’t get full relief straight away,I can roll around on my bed profusely rubbing my lower half for 4 hours on 15ml / it isn’t until I wait until my next lot that I get enough relief to cope but still bed bound.
It’s one of the best things that’s happened regarding pain relief.
Thankfully,I don’t frequent A&E like I use too.I once had a GP tell me how she sees too many young girls and women walk through her doors,being referred to hospital.All because they don’t have sufficient pain medication
I had a mirena coil put in when I had a lap,I had a horrid time with it.
Like yourself I had severe cramps/pain and bleeding
Did your gynaecologist not mention it could take a while to settle?
I was told that it takes time to settle down and can take quite a few months to do that.
After 8 months i begged to get it out because of the pain I had to wait another 5 months to get it removed because they still thought it might settle.
Some ladies have had really great results with the coil so I hope you’ll be one of them.Hopefully your cramps subside again.
In the mean time,
All of the things you’ve mentioned above would be good alongside proper medication.
The user Noodle and others have added some awesome advice.
I hope you are resting up as much as possible and being kind to yourself.Self care is imperative plus it’s world mental health day so what better time to learn to be kind to yourself and to listen to your body and focus on healing.
Thank you so much love. Bless you for having to go through such a horrific time!
My GP did prescribe me Diclofenac suppositories but I had 10 and they’ve run out. They ran out within 2 weeks! I’ve been grinning and bearing it since then because they haven’t given me anything else since. It’s been excruciating. Even at work I’m gritting my teeth trying to cope with it and putting on a brave face because I’m the medic, and I have people to look after. Even though I know I need to look after myself first.
I’m hoping that my GP will prescribe me something, even just as an if and when it’s needed type thing. I’m at my wits end 😩
Awww bless you!I know only too well about sticking on the brave face.Its the hardest part!
Yeh,definitely get on the blower and speak with your GP.Im adamant they can prescribe you more Diclofenic along with strong pain medication.At least that will help you get through while you work and heal.
Keep on fighting..i hope everything goes well with the docs
Lots of great advice above. I would second the lady who said get an ultrasound to check if the coil is still in place. It may have moved and be causing you more pain because of that and that would definitely need to be sorted out. Good luck and as the others have said, look after and be kind to yourself xx
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