Endometriosis UK

Please Help!!! Mirena, Endo, Post-Lap, desperate now!

Hi everyone,

I am looking for some support as I don't think I can take much more of this. I have suffered symptoms of endo since I started my periods so about 7 years. Finally in March of this year after fighting for years I got my laparoscopy.

Mild endo in pouch of douglas and scar tissue on left side of pelvis was removed.

3 Months on I have had the worst period of my life- I cannot take this pain anymore. I was climbing the walls with the pain. I also have pain throughout my cycle, I'd say 80% of the time I am in pain.

I am taking huge amounts of time off from work (training to be a midwife)

This disease has made my life so so so hard in terms of work, relationships, social life and battling depression which has come with the side effects of chronic pain and spending so much of my life in bed with a hot water bottle.

So after my laparoscopy the consultant basically said he had excised what was found and believed my endo will not come back and i will be fine now, I was discharged back to the GPs and that was it. No follow up no advice no after care. Been back to GP begging for help. Only thing offered now is the Mirena coil or the pill. I am due to have coil fitted in 3 weeks time. Terrified re side effects and pain of the insertion but I am desperate and willing to try anything now.

I am on the endo diet in a hope that may help my symptoms too.

Very early on in my journey, around 6 years ago I had a lot of mid cycle bleeding which has since stopped, but at that time I had a hysteroscopy and they found small fibroids which they said were benign and would go away by themself.

My concern is that the inside of my womb could be riddled with fibroids and they wont have picked that up on the laparoscopy.

What should I do next? Go back to GP and ask to be re-reffered to the endo gynae specialists who discharged me after my lap? ASk for a hysteroscopy? Try the coil and wait it out see if that helps?

I am 25 and single, and not likely to be able to have children for the next 3 years due to my studies but am completely terrified that by the time I get the chance to try for children it will be too late, everything in there will be screwed up with endo and I will be infertile. The anxiety of this is effecting my everyday life.

Just looking for some ideas about what on earth my next step should be. I always sense the GPs and even specialists think I am being pedantic and over the top or hypochondriac but I can't take this pain and the worry of what the hell is happening inside my body and how much of my life its stopping me living anymore.

PS- I love the community on here thanks so much everyone x

3 Replies
oldestnewest

Hello,

Sorry to hear all this!

I had they coil fitted over a year ago - I can't lie for me it wasn't easy, I ended up having to get a smaller coil fitted which only last 3 years. I was so reluctant to get it, and tbh I think I stressed myself out more than anything but it has helped.

My problems have not disappeared completely but some have lessened and my period are much lighter. For some people I'm told they barely exist - so if you are at your wits end then it is worth trying. You need to give it 6 months if you can - I was tempted to get mine out, I felt sick,had randoms pains,my hair was falling out for a time, but now I have had it a while I can see the benefits - whether or not I will get another, I'm not sure. But for now I'm keeping it in.

If they had any concerns about you having children I'm sure they would have mentioned it. I have been told it might be difficult, not not off the cards. My friend who by chance found out she had it, actually had it pretty bad and was told she is best to start in the next couple of years.

If you don't feel confident your doctor is listening - change. I have been going to my various doctors since my periods started about these problems, I used to be in such awful pain I'd pass out,be sick etc...it was only when I moved and got a nice doctor a few years ago that I was actually sent to the hospital gynaecologist.

Reply

Hi, I agree that the Mirena is worth a try. Not only is there a chance it will work for you, but also once you have tried it, if you still have problems it will be easier to get them taken seriously. It's a first line treatment for endo these days.

I hope you feel better soon. Hang in there!

Reply

I had my second lap last week. During it I had the mirena coil fitted (don't know what size. Didn't know there was different sizes).

During my first lap they found adenomyosis. Which is kinda endo in the uterus wall (Google will explain it fully). So I would not worry about it being there unless they've told you it's there.

I've also been on thr pill since I haveas 15. 27 now. Just before chirtmas my gp changed my pill to yasmine. And i take it 12 weeks at a time. Followed by a 1 week break. So I get a fairly good 12 weeks which is nice. You could ask your gp about taking the pill for 12 weeks at a time.

My mirena was fitted during op so I didn't feel it. But I don't feel it now either. I just have my same feelings down there as before of pressure in strange places. But still recovering from op so will hopefully be able to get more relieve as I heal.

There's plenty of options give them all a go. And try not to worry about something that isn't happening right now (having a baby). Put your effort into your studies and finding the guy for you.

Good luck. Hope you find something that works for you.

X

Reply

You may also like...