Scared, fed up, don't know what to do!! - Endometriosis UK

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Scared, fed up, don't know what to do!!

gmcgill92 profile image
3 Replies

Hi ladies! Hope your all getting further along with your treatment than I am!!

It's been 2 1/2 years since I have been able to have sex with my boyfriend due to dysperunia, which is not ideal! He is so supportive but it is putting a strain on our relationship!

I had a lap in February 2014 and my surgeon found adhesions to my bowel and appendix but no endo and my ovaries are slightly polysystic! I had no change in symptoms since my op! I still get horrendous periods, discharge, cramps, back ache, can't have anything go internally etc and this didn't change at all after my op!

My gyne has been treating me for endo even though none was present which I am confused about! I feel like he is ignoring other conditions it may be! Has this happened to anyone else?

I have been on Yasmin, mycrogynon and zoladex! I had my last zoladex injection in November! Zoladex helped ease most of my symptoms but I was still unable to have sex! Since the injection has worn off I have got bad discharge and cramping again and waiting for the mother of all periods!!!

I went for a follow up with my gyne 2 days ago and he admitted he doesn't know what's wrong! He said if it was endo the zoladex should have helped etc! He doesn't seem to understand that I am fearful for my future! I am worried that I will be unable to have children as j can't do the deed and the underlining problem isn't being fixed!

He is now saying to have a second lap which I am pleased about as I know in myself that something's wrong and hopefully second time lucky he will find something! I am not happy that he has suggested giving me the marina coil whilst I'm under!

I have heard so many horror stories with marinas but that's not my only concern! I have had reactions and awful side effects to Yasmin, mycrogynon and mild effects on zoladex! If the coil is fitted and I have a reaction to it it's not as easy as stopping taking a pill etc! The only way anything can go internally is for me to go under anaesthetic due to pain which will make a longer process to remove it!!!

I'm looking for advice really on wether to have the coil or not based on my side effects to other hormonal pills etc? And also if any of you have had your gyne not know what is wrong!! I'm very worried now as it's been an emotional 2 1/2 years and I'm still no better! Do you ladies think it is endo or something else?!

Sorry for the long post but need advice from people who understand!

Hope your all well.

Thanks Grace xxx

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Tracey29 profile image
Tracey29

Hello Grace

What a horrible time you are having and frustrating you don't seem to be listened to.

Over many years I have tried a lot of hormones and in my experience the mirena coil was the best for not making me mad! I was on microgynon and wAs really horrible. My gynae reassured me that the hormones in the mirena coil stay within the uterus and only a tiny amount is absorbed into the bloodstream so doesn't effect you as much, which is what I found. I can't say the mirena resolved my problems but certainly lessened them for a while.

I hope your next lap reveals something you can be treated for and things get better,

gmcgill92 profile image
gmcgill92 in reply to Tracey29

Thank you! Xx

Starstellar7 profile image
Starstellar7

Is your gynae an endo specialist? I would ask him so questions about what endo looks like in each stage. Apparently endo can look clear at times and so is difficult to spot, it might also be under the surface and do harder to spot.

Have a read up on this and make sure that your specialist knows what they are looking for.

Also if they are removing it, how are they going to do it? Lazering will be temporary I believe but excursion will remove it from that area.

Good luck with it. X

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