Problems with mirena coil and possible endometriosis

[shannonnel]

Hi everyone,

I'm new to this and was just wondering if anyone could please offer some help/advice.

I'm 19 now but ever since my first period (when I was 11) I've suffered from daily pain, especially from around 13 to 18 (it was so bad that there were days I couldn't even get out of my bed). My periods have always been extremely heavy (sorry TMI) and during my time of the month I'm usually so sore that I can't even use a tampon and still manage to soak through a night time pad...

I don't even know how many times I've been to my gp regarding this matter and I've had countless scans, but the pain was always put down to IBS (which I believe I also have as my family has history of stomach problems). When I was 13 I was put on the pill, though I've been on about 8 different ones but the only one that's actually helped my periods was dianette (also basically got rid of my acne!)

I have constant pain in my lower abdomen/ back, and it almost feels as though my ovaries are being ripped out from the front sometimes? I also (sorry again TMI) feel as though a dagger is coming at me from down there between my legs. I used to always get UTI's and had to go to a&e when I was 15 as I hadn't been able to pee in more than 12 hours and my tummy had swollen (not sure if this is related/ if anyone else has had bladder problems?) I'm constantly bloated from just beneath the bra, it doesn't even matter if I've even ate or not yet as I just wake up from it, some days worse than others.

It was only last year that my specialist (for my migraines) mentioned that she believes I have endometriosis due to my symptoms.. I was referred to a gynae who I mentioned about a laparoscopy to and was told that 'that would be the last option' due to the cost of it?! I was offered the mirena coil instead as it would 'help to ease the pain if it was endo' yet I'm still suffering from pain, it's not as bad but it's still there.. I'm bleeding near enough on a daily basis, I've gained a stone since December, suffer really bad mood swings and my acne is awful, my skins constantly oily and so painful it's literally been the worst decision of my life as its brought alongside it so many other symptoms! Has anyone else experienced this?

I don't know if this is relevant but I was born with a womb that tilts back towards my spine? When I got the mirena coil fitted (under anaesthetic due to not yet having children) the pain was so excruciating I just wanted to die which sounds awful.. No pain medication was even cutting it and I soaked through an entire hospital gown with blood and was kept in 6 hours longer than expected. I regretted my decision to get the coil in almost immediately.

I've been back and forth to my gp asking to get it removed but was told to give it 6 months and then I went back regarding my skin and was put on another pill (similar to dianette apparently) which did absolutely nothing but was meant to stop me from bleeding and help my skin. I then went back again and was told that I had to give it longer (again!) and finally had enough in May and was adamant that I wanted it out but because I suffered from such bad pain getting it fitted, there's no way I could even contemplate having it removed in the doctors surgery.. I'd need to be put to sleep again! I now have to wait until October to even be seen..

I just feel like I'm constantly being messed about, I still haven't even been properly diagnosed with endo as was told you need to have a lap done to do so? Yet every time I mention a lap it's dismissed? I'm also feeling really down about myself as weight is a really touchy subject for me and I don't even fit into any of my clothes (gone from an 8 to a 10 in 6 months). It's not even comfort eating as my diets the healthiest it's ever been and I've been exercising. I just feel like I've been blown up! But because I have to wait until October to have it removed (making me feel even worse) I was wondering if anyone has any tips on how to loose the weight (I'm guessing its water weight?) if they've suffered from the same thing?

Also, any tips on how to go about getting a laparoscopy? I keep hearing about getting a specialist but how do I do that?

Any help would be really appreciated as I've been suffering for nearly 7 years now and I'm just so fed up of it all and want to feel myself again!

Thank-you xx

[Chloerosesmith]

Hello, I am too new to all of this, I'm 22 and had extremely painful periods for as long as I can remember - heavy was one thing that didn't bother me too much but the PAIN oh my, the sharp dagger pains you are describing sounds incredibly similar to what I experience (I got it up my bottom which took my breath away and couldn't even walk when I got this!!!) I also have suffered like you, with ibs symtoms, bloating and constant uti problems!!!! Please, get yourself to your doctor and beg to be referred! Because you are 19 and young, they may try and fob you off which even MORE scans but i was told by my gyno that you can't even pick up endometriosis from scans - even internal ones!! It's scary, I know. Like you, I also went to several scans and put it down to ibs and prescribed me buscapan but it didn't work! It took my GP 4 years (I was 19 when I first went to the docs) for them to finally refer me to a gynaecologist and immediately felt in the right care when I went to see him and I actually went in for my key hole surgery 6 days ago now so still recovering. Unfortunately I do have endometriosis, but there's so much out there now to help treat it and keep it at bay! Don't panick, just don't give in - keep going to that doctor and get the diagnosis and treatment you deserve. All the best xx

[shannonnel in reply to Chloerosesmith]

Thanks so much for your reply! Yes the pain is awful on a daily basis but when it comes to my periods it almost gets 10x worse which doesn't even seem possible in the first place? I'm usually doubled over in pain and get frequent sharp pains randomly.

After my fifth scan I was then told that 'oh it's usually extremely difficult to pick up endometriosis through a scan'... I feel like it was such a waste of time/money! I do feel like I'm being fobbed off because I'm young but I'm just so sick with feeling this way and wish I could get a diagnosis.

Aw I'm glad you've finally got one and hopefully you start to feel a bit better now!

Thanks again for your reply, I'm actually starting to feel a bit normal that I'm not the only one feeling like this! Xx

[Chloerosesmith in reply to shannonnel]

I'm miles away today (I think it's the strong pain killers the hospital have prescribed me ;)) so you've had the coil?! I'm shocked they put this in first as they usually like to do a lap first to diagnose it THEN put the coil in! So I feel for you that you've had this put in (if you haven't had kids , like me, I was told it can be alot more painful as it stretches your cervix) I actually refused this as I didn't want the coil as I'm nearly 23 and want to start trying for kids next year! I'm just hoping since I've had it all zapped away that my periods will get better (fingers crossed) but to me it does sound like you have endo and I feel so fustrated for you because I was exactly in your shoes!! Just don't give in whatever you do. They don't like to refer when you are under 25 it's ridiculous! just refuse to leave your docs until they have referred you! also, I would tell your gp you DONT want to see the same gyno you saw last time because he sounds like they should have considered a lap first!! She can refer you to somebody different x

[shannonnel in reply to Chloerosesmith]

Yeah I've had the mirena coil first! I even did some research (my mum helped as I was only 17 when I was referred to the gynaecologist in relation to the coil) and mentioned the laparoscopy and how the scans wouldn't have picked endo up if it was there and she said that it was the last option and it would be better trying the coil first? I don't understand how the coil would even help if you do have endo present because surely you'd need to have it removed first before noticing any pain relief?

I'm definitely going to request to see a different gynaecologist! Thanks so much for your advice hope you have a speedy recovery! Xx

[Chloerosesmith]

Sorry I didnt really read the last part: okay to get a specialist to see you, you need referral from your doctor. And trust me, they tend to try and dismiss this!! It's very frustrating and it actually resulted to me storming into my doc surgery in Agony in a ball until I was seen! and to put it lightly I went a little mad at how much of a joke it was that I hadn't been refered yet! Mentioned age discrimination too (because it is in a sense) and that I physically and emotionally could not put up with this pain anymore. She then referred me! so, do what you have to do! Be the sternest you can be and get referred. Refuse to leave the docs until you are seen! Because those 4 years it took me, it was building up inside! Luckily I have private healthcare through work, so I went privately and was seen, diagnosed and operated on within two weeks! Expect waiting times through nhs unless you can get some money together for a private consultation! Good luck! Any questions you can come to me

[shannonnel in reply to Chloerosesmith]

I'm just going to have to keep going back, feel like I'm never out of the place lol. Thanks so much for your advice!

I actually looked in to going private but it's just so dear so unfortunately I have to persevere with the nhs for now!xx

[Emilina29]

i tried every pill and after 6 years of pain was given the mirena. Suffered everything the same as you. Got suicidal thoughts too. I put on 3 stone in total! They put me on yasmin at the same time and my life became unbearable. I eventually called up sirona healthcare who run weekly sessions near me, and explain the situation. I said that if they didnt remove it, i would rip it out as its making me depressed and anxious (sorry for bluntness there). They had me in the next day. The doctors were shocked I had it removed as they said i should have kept it!?!?!?!

I am now on yasmin (and thats it). I have a break every 3 months for a one week and it suits me fine. Only time I get pain now is when i am stressed.

Hope you find a solution soon lovely. Its horrible and know exactly how you feel.

Message me if you need to!

xx