Endometriosis and Coil

[amyrrae]

Hello Everyone,

I hope you're all having a nice bank holiday weekend! Just wanted to ask a few questions here...

I was diagnosed with Endometriosis Stage 2 around a month ago but have had symptoms for 8 years. I just got the coil fitted around 3 weeks ago and have had awful awful stabbing pains since. These happen when I either need the loo, or if I'm bleeding, which I have been constantly (I've been bleeding non stop since last July, so that symptom isn't new) and it feels so different to endo pain I've had previously.

The stabbing pain happens for a few seconds on and off, and can go on for anywhere from 30 minutes to, so far, 3 hours. I'm unable to walk when it happens. I went to A&E last week and they told me to take paracetamol after 5 hours and sent me home. I also have (get ready for tmi) really uncomfortable period poo's since I've had the coil put in. They're not PAINFUL, which I know can be a red flag, but my bowel movements are definitely affected and it feels more like I have a slightly upset stomach on that front constantly. Has anyone else had this?

Secondly.. I am in an extraordinarily privileged position to be able to get surgery privately through funding of friends and family (I got diagnosed privately, and of course the NHS need to complete their own diagnosis so it can't be used). I've finally been referred for a laparoscopy through the NHS, but I'm hesitant to take surgery up for a few reasons.

1) I'm generally speaking, terrified.

2) I'm worried that if I get surgery privately and the endo is removed, the NHS will declare that I don't have it at all and I wont be able to continue to get surgery - should I need it - through them in the future. I of course don't want to be stuck going private - the opportunity to fund a private surgery is a one off.

The whole journey is exhausting to be honest. A gyno spoke to me last week and suggested that if the coil pain doesn't settle down to go into an early onset menopause. Which I really, really don't want to have to do. Not just because of the ability to have kids, but I can't bear to try something that life changing that STILL might not work.

Sorry that this is so long.. does anyone have any advice? Thank you so much in advance x

[RJFERG]

Hi Amy,

Thanks for sharing your comment, I'm really sorry you're going through this, but well done for your resilience. Full disclosure, I don't have the right answers for you but wanted to comment to let you know that I'm going through the exact same situation at the moment and share my experience because you're not alone in this. I have been trying to get an 'official' endo diagnosis for about 8 years and given all of my symptoms I was asked to get the Mirena coil.

My reaction to the coil sounds like-for-like with yours. I actually fainted after the insertion on the street and someone had to call an ambulance! My stabbing pain with the coil did eventually stop and things eased up, but if you are struggling with the coil, you absolutely do not need to keep it. I kept mine in for now, but it is not effective in helping manage my endo symptoms, likely because my endo is bowel-related – but nobody has been able to confirm this. Have you tried other contraceptives as treatment, are you able to try the combined pill? I am sadly unable to, as I have a history of breast cancer in the family, but it was suggested that this could work better if the coil is causing you further pain and discomfort?

Regarding your surgery – again I feel like I have the exact same issue but am a little behind you on the journey. I have been referred by the NHS for surgery as a form of diagnosis but am unable to get surgery for at least 12 months. I have just managed to sign up to my partner's private health insurance offered through his company and can luckily afford a one-off private diagnosis of endo through a laparotomy. However, I am very concerned that the insurance policy will only cover the diagnosis of the condition and they won't actually be able to remove any of the endo tissue which is my main priority, given nothing else works as treatment for me! I was wondering, was your endo diagnosed privately with surgery?

In terms of the NHS removing you from their lists and claiming you no longer have endo, I may be wrong but I don't think this could lawfully happen if they have your medical notes and your diagnosis. Your GP should have a full record of previous surgeries and diagnoses and you're able to request these on demand. I believe it's also mandatory for private trusts to pass over any medical history notes – although whether this happens in reality or not is a different issue.

I have the same concern though that once you've gone private you'll never be able to get back onto the NHS again and that is also one of my biggest fears as like you said, having a private surgery is a privileged one-off chance for me too.

I have been reassured by some friends that the keyhole surgery is painfree and very low-risk in 95% of cases. If you are struggling with your overall health (mental and physical) and it is affecting the quality of your life you should consider if the surgery will help you overcome these things and try not to worry too much about the NHS – cross that bridge when you come to it, just find a way to help you manage your symptoms in the way that the coil is not doing for you.

Good luck in whatever decision you take – I understand this is not easy by any means and there are so many nuances and complexities to consider. Wishing you the best and please keep us updated on your progress.

[amyrrae in reply to RJFERG]

Hello!

Thank you so much for your response... brought tears to my eyes aha. I so appreciate you taking the time to reply and share your experience, though sorry that you've shared some awful experiences. I almost fainted upon Mirena insertion too - the pain was unbearable and there were so many complications. My body went into shock with it and was shaking uncontrollably which made insertion much harder.

Interesting that the coil isn't able to assist with bowel related endo. I wasn't aware of that though of course, it makes sense. Unfortunately, the Mirena coil is the fourth type of contraception that I've tested. I had 2 Implants over 4 years, up to when my bleeding became uncontrollable again, and since, two types of contraceptive pill (both have not helped any symptoms or stopped bleeding). I have breast cancer running in my family too, but supposedly there was a hereditary gene missing that meant I was able to take the combined pill for the last 9 months or so, until getting the coil fitted. I think that's why it was suggested that I look into early menopause. Even the idea makes me shudder. It's such a shame that there isn't obvious evidence on how likely ANY contraception will help even one symptom, if not the entire disease.

Has the Mirena coil eased in terms of stabbing pains and upset stomach symptoms for you now? Or has that just become a normality? To note as well, now I'm thinking about it, I exercise a fair amount and every time I have since getting the coil fitted (I waited a week or so for the pain to ease) - it's caused so much pain that I've had to stop. I'm not sure what I should consider a red flag at this point!

That's fantastic about your partners health care insurance. I had some but they didn't cover any chronic conditions or Women's fertility issues which is such a shame. It's crazy how it takes a surgery to diagnose it... and then another to actually get it removed. It's worth getting a proper diagnosis though I think. My endo was diagnosed with a clinic in London with a TVUS. Supposedly speaking, the only clinic who CAN diagnose it with a TVUS as opposed to a laparoscopy. They saw endometriums on my left ovary and a lot of darkness which is how it was diagnosed. But theres no real indication of how bad it is and exactly where - as of course, there was no surgery completed (this way, they could charge less for the private diagnosis, meaning I could save the thousands of pounds for the surgery if it was urgent). I just wanted to fast track some answers for myself aha.

It's more that I'm concerned they'll say that theres nothing there and I then can't be diagnosed officially with it if it's all been removed with surgery privately. But, that's really good to know. Thank you so much. It seems a bizarre position for us both to be in, to hesitate in accepting surgery to help symptoms, for fear of not being able to get help through the NHS in the immediate or nearer future.

Goodluck to you too! I hope that things ease somewhat. Do let me know how you're getting on with the coil. Do you try anything in particular for pain management or mental health management outside of allllll of the hot water bottles, naproxen and tea? Which is what I'm currently using haha!

[Mcyizml2]

A bit of pain and bleeding are apparently common with the coil. I bled for 50 days straight and then on and off but three months later no pain no periods 🙌 (although no advice replaces that of your gp so do check).

I’ve been able to avoid surgery as I’m pain free despite having quite extensive endo and adenomyosis and am hoping this will help avoid progression.

If I was in pain I’d pursue surgery, probably privately if the waiting list was long. Just watch that there are nhs standards for care in specialist centres, including nominated specialists and involvement of colorectal surgeons. If you do go private if google your local specialist centre and surgeon and go to them privately. Also explore what happens in an emergency because private hospitals may not have critical care. Re. getting back into the nhs they won’t refuse you and if anything it can be helpful to see the consultant privately because then you have a written diagnosis and I believe some will even make sure you go on their nhs list, this happened for my dad.

[amyrrae in reply to Mcyizml2]

I figured as much. I just have no idea what’s normal… this pain feels like a knife going through me and causes full body spasms. Not like period / endo cramps. It’s excruciating. I keep waiting for it to disappear as my body ‘regulates’.. but it happens minimum 2-3 times a day in either singular bursts or half hour / hour long periods. It’s so frustrating.

I’ll definitely look into emergency cases as that hadn’t even crossed my mind. Thank you so much for that suggestion. Just torn as to whether it’s worth waiting for an NHS laparoscopy (apparently the wait is between 4-24 months..!) or whether to pay to have it done immediately. I know this sounds ridiculous.. but I almost don’t want to have to actually choose when I’ll have to take 2-3 weeks out of life which is making the NHS route, though longer, a bit more appealing.

I’m so happy for you that your endo is now pain free and hope that it always remains that way for you! Great that the coil worked for you. I’ve heard so many people who swear by it.

[Mcyizml2 in reply to amyrrae]

Totally get it. If it were me and I were in pain and insured I’d go private I think but only with the specialist Center gynae and I’d have the chat about whether a colorectal surgeon was needed as well. I don’t have comorbidities/other stuff going on and would have probably feel fine about doing it in a private hospital without crit care vs a wait, especially if the wait is to the first appointment and then there’s a further one to the surgery itself…

[Greenknitter08]

Hi Amy,Sorry to hear you are going through this. I went through the same thing. Some swear by the coil. I had a terrible time with it. The pain was excruciating. I had it removed after a month. My skin broke out & has never been the same. I tried it to satisfy my gynae at the time that I was trying every route. Tell them you have tried, it's causing additional pain and have it removed.

In relation to private diagnosis. My cousin was getting nowhere so paid for a private appointment. Her consultant also worked for the NHS as is usually the case. He added her to his NHS waiting list & performed a laperoscopy. She was diagnosed with endometriosis & he removed it. She is doing really well 🙏.

Do your research on your consultant.

I hope this helps a little & wish you the best in getting yourself sorted xx

[amyrrae in reply to Greenknitter08]

Thank you so much for this. My consultant did work for the NHS but mentioned he wasn’t able to make a referral himself. I’ve been referred finally regardless.

Actually really confusing.. my friend in a similar position was told there’s a maximum of 4 months wait for her diagnosis. I’ve been told up to 24 months at the same surgery !! Anyway.. maybe surgery is the best way to go. Not sure how much longer I can sit with these shooting pains from the coil.

I’m sorry that you also had an awful time with it. Are you on any other contraception that has since helped?

[CFin]

Hi Amyrrae, I had a very bad experience with Mirena coil! After insertion I had a lot of pain, I’d expected a certain level of pain but not what I had. The gynae had told me the bedding in period for the coil is 6 months, so desperate for a solution to my problem, I persevered. I persevered for 4 months and couldn’t any longer and went back to the gynae and had it removed. I felt immediate relief once it was out! I even cheered 😄! Within a year I was back at the gynae, same gynae, and he suggested ablation, he needed to first check the suitability of my uterus for viability of the ablation procedure. The outcome was that it wasn’t going to be viable because he found I have a bicornuate uterus (ie. a heart shape). So this would have meant the mirena coil couldn’t have stayed in place because it needs the wall of the uterus to hold it in. So my coil was probably loose and hence causing all the pain I had. (And not a word of apology from said gynae for the pain his previous oversight had caused me!)

Not enough checks are done before coil insertions. Women are pressured, as I felt, to have it put in. Even NICE guidelines have it a one of the first line treatment for gynaecological issues, a handy catch all!

If it’s causing you pain, I say get it removed!

[amyrrae in reply to CFin]

It’s so frustrating how the GP and so forth tend to request you wait through 6 months of agony before deciding it’s not right !! I’ve also just been hit with a huge migraine which I imagine is from the coil and how heavily I’m bleeding too.

Crazy, but understandable, that the shape of your uterus affects it that much.. but it isn’t standard procedure to check before fitting it. I definitely felt immense pressure to get it in and would never have considered if if I wasnt told how fantastic my life was going to be afterwards. 😂 what a joke that’s been for the last 3 weeks haha.

I think I’ll get it removed. And then it’s just whether I decide to go for surgery - I think I’ve worn out every other form of contraception bar the Ring