Having an IUS fitted with vaginismus, how to check for threads? and other concerns

[JustPain2]

Hello,

According to two ultrasounds and one MRI scan, I've got both endometriosis and adenomyosis. They've tried different combined pills, the mini pill, and norethisterone, but none of them helped much or for long.

The gynae has now suggested to fit an IUS. I don't like the idea, but I'm in so much pain constantly, that I don't know what else to do. I thought surgery was the answer until I read this article: bit.ly/3HWCy2O . On top of this, I know two people who've had surgery and only did well for a few months afterwards.

I've got an appointment at my surgery to get the coil, but I'm very concerned. I was prescribed diazepam and I'm supposed to take it before the appointment, so they can fit the IUS.

But the fitting isn't everything, I've been told you need to check that the device is still in place, especially during the first few months, and you do this by inserting a finger into your vagina. I've got both vaginismus and dyspareunia. How am I supposed to check? I'm very worried about not being able to.

Also, I know you can get PID after having a coil fitted as well, but one of the main symptoms is severe pelvic pain which I always have, how am I supposed to know if it happens to get infected?

Do you think it is a good idea to have an IUS fitted in this situation? They aren't giving me many other options, and they haven't been listening to my concerns.

[635703]

I’m sad to hear of your pain and some of the medical words I haven’t researched. But I am a fan of The Mirena Coil. I have used them for the past 17 years and they gave me my life back, no endo symptoms and a 3 day bleed requiring just a panty liner - heaven!!

The diazepam will help chill you right down, I use it for medical appointments too, all of them.

It’s less than 2 mins of pain and the more you are able to relax your body, the easier it is to get it over with and the less it hurts. This maybe tricky for you. I meditate and this helped me breathe through it all.

Feeling for strings is something you can ask the nurse to do at your surgery given your medical history, so I wouldn’t worry about that. Obviously it’s better if you have a go. I have never had an infection from a Mirena and have had awful pelvic pain. It’s not the Mirena it’s the Endo.

It’s really difficult but give it a go and see how you het on!! It might just be perfect for you and it’s definitely was worth it for me - life changing!!!

All the best lovely and if you’re worried, happy if you DM me x x xx

[Fizzypoptastic in reply to 635703]

Hi,

I’ve had the Mirena for a year now too & it’s amazing. Can I ask whether you had any surgery as well as the Mirena? I’m stage 3 Endo & have a pre-op on 09.02. I’m in two minds about surgery even though I’ve been waiting for 2 years.

I know lots of people have to have multiple surgeries as the pain always comes back.

[JustPain2 in reply to Fizzypoptastic]

I'm on a waiting list for surgery, but I'm doing everything I possibly can to avoid having it. After reading that article I linked in the post, I'm also concerned about the pain coming back magnified.

[635703 in reply to JustPain2]

I have just read the article and I’d discuss this with the consultant becauae mine is a Professor at the teaching hospital. They often have a very up to date knowledge of current studies and may be able to give some reassurance by means of an explanation. I trusted her answer on something I was concerned about because she told me why.

My other concern is it’s a news article in The Guardian and not a robust scientific journal. To make a decision not to have surgery on one news article is a bit thin on evidence. So that’s why I suggest a discussion with The Consultant to further expand and consider their expertise a bit further.

We definitely need more funding into research of Endo and women’s health, as you so rightly express concern but I don’t know of any alternatives. Beyond natural therapies. Which I use alongside medicines as a complementary therapy.

I love that you’re asking good questions and it’s definitely made me think and question my own treatment in a positive way. Thank you.

[635703 in reply to Fizzypoptastic]

I had diagnostic lap with ablation of Endo, a gnhr analogue injection and a Mirena fitted in 2007. Just had my second lap in October and had a Mirena inserted before this. Had Gnhr analogue injections (zolodex) and tibilone HRT and a Medical Psychologist for pain management - I also have another non Gyne painful condition.

The fact you’re doing so well with the Mirena is excellent news! I have no idea of what to consider because you can ask the questions to the Endo specialist.

Overall they used to replace the Mirena after 3 years and now they told me 5 years and I maybe heard longer now? I did find the hormone wearing off and symptoms returning when it was due to be changed. Then I bounced back again with a new one.

I’m so happy you respond to Mirena’s too ☺️ best of luck 🤞🏼 for your next step 💕

[JustPain2 in reply to 635703]

How long did you have to wait for things to settle with the Mirena? They say you can have spotting and cramps during the first few months.

[635703 in reply to JustPain2]

I don’t think it was more than a week or two but everyone is different. My last Mirena was probably a bit longer but I haven’t had a post op appointment and so have no context in which to explain the reasoning as to why.

It is much much milder than my Endo pain and it’s about persevering because once settled I got my whole life back.

[Fizzypoptastic in reply to 635703]

Thank you so much for your reply. I’ve been told 5 years to change Mirena.

I’ve not been given a date for the op yet but I think I’ll go for it.

Did you experience any bleeding afterwards?

How long did it take for you/your body to recover? I’ve read 2-6 weeks? Not sure how long I’ll be off work for

😊🥰

[635703 in reply to Fizzypoptastic]

after my lap, bleeding was more smallwe this time, bleeding for a week. This time there was very little air in me and not much pain and I managed with otc pain stuff and occasionally prescribed pain killers. After 1 week I was good to have intercourse again. Hope that helps x x x

[Fizzypoptastic in reply to 635703]

That’s very helpful. Thank you so much for replying again. Xx 😊

[635703 in reply to Fizzypoptastic]

You’re welcome! Every persons body is different ok and manage your expectations so you won’t be frustrated and disappointed incase you don’t heal quickly. Be so kind and loving towards yourself x xx Always here and happy for you to DM me x x x All the best lovely 🥰

[Fizzypoptastic in reply to 635703]

That makes sense. I’ll remember that whilst recovering. Thank you lovely lady. xx 🥰😊

[Horses2019]

All you can do is try it. You will know if something is wrong. I couldn’t check position of iud as strings were cut so short. Nurse had no problem checking for me.

Had coil fitted during excision surgery 18months ago. The pain is less but having period every 2weeks and now suffer with hormonal headaches. No follow up so awaiting another referral.

[frozenbluebells]

I've had a non hormonal copper coil for about 5 years now and I've never been able to check my threads, despite being constantly told how important it is. For personal reasons I can't touch my own body in that way so I've always just popped back to the sexual health clinic who fit my coil originally for them to check properly. I'm getting my copper coil swapped to a mirena coil next month to hopefully help my endo symptoms. Please don't worry about not being able to check your own threads, it's a lot harder for some people. But don't let it put you off trying the coil, there'll be help available to you when it comes to checking the coil is in place and looking for infection.

I hope you don't have to wait too long for some pain relief 💛