Hi, first post here, I was diagnosed 6 months ago with "99% chance I have endo, but can't confirm until lap performed". I'm 26, and have suffered with bad periods since I was 14. After 11 years of going back and forth to doctors and being dismissed, after having issues with pill being discontinued and several others having severe side effects they suggested I got a mirena. Week after having it fitted I developed severe debilitating pain, almost worse than having a period. I had it checked, and all was in place, and finally managed to get gynae appointment where they decided that I probably had it, but didn't want to take drastic action just yet. Also been diagnosed with severe pms.
Fast forward 6 months, I have had Pain every single day, some days mild cramping and others so severe it means I can't walk or stand, and my hormones have felt so crazy I can't remember the last day in over a year when I have felt "normal". Pms is severely affecting my relationship, and it just seems out of control. Dont think he fully understood how bad it was until he came to my removal appointment and heard from doctor what steps are next. Have finally had coil removed this week, felt better than i have done in a year for 1 day, then heavy bleeding started, flooding, and my hormones going crazy again. Been put on hormonal replacement therapy, micronized progesterone, oestrogen patches, and when I'm on have menfenamic acid and tranexamic acid to stop heavy flow and pain. Bloating has also been so bad, I have been asked twice this week if I'm having a baby, which immediately set me off in public and is highly embarrassing for everyone.
Has any one got any experience with these medications and whether or not it helped?
Has anyone got any advice on the bloating situ, as I don't fit into any clothes and can't take the embarrassment any more!
Has anyone got any advice on how to manage the mental strain of it all, as I am really struggling with having been in pain/discomfort for 6 months, and the pms not helping the situation? I'm struggling mainly with the thought of there being no end to the pain, thought of possibly not having kids, the effect it's having on my relationship with my uncontrollable moods, and what is to come next if this doesn't work.
And is there anything I can show my partner to possibly help him understand what it is like, and hopefully give him a bit more patience and help him realise that I can't always control how I am reacting to him, and my moods in general?
Sorry for such a long post, I've been finding it extremely difficult and find there isn't really anyone who seems to understand, and I'm hoping now I've found this community I can find people who have been through the same things and try and get through it, as I seem to just be getting more and more depressed and finding it harder every day. There just seems to be no end to it, and nothing seems to be working!
Thank you for your time and any help will be greatly appreciated. It is completely affecting my daily life, work, relationship, mental wellbeing, and stopping me from doing simple things and being able to go out and enjoy myself.
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Tmuss
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I am sorry to read your story. I have not been on any of the medication you have mentioned in your post, only the tran acid. I totally get how you are feeling and I hope that what I write you find to be of some use.
I have really struggled since I started my periods and just put it down to the fact that my periods I have are down to the hand I had been dealt by the females on my mothers side of the family. Many years ago I did go to my GP regarding my periods and mental well being and they checked fibroids. Because they could not find any they just put me on the pill. The pill did serve its purpose but then I came off it as I knew my partner and I would want to have a family. Once off the pill the pain came back and my mental well being suffered. I did take up boxing to get fit and lose weight and I found that to be great for my mental well being. I would encourage you to try and do some exercise like that to help you. I totally get that when the pain is kicking in you cannot do anything. I have only managed to attend the gym a handful of times this year due to my health as a result of endo and I have hated it.
I was diagnosed with endo in June as I was admitted into hospital with severe pains from a cyst on my ovary. My partner and I have not been able to conceive and going for regular scans (due to the fertility meds) where they found a cyst, that over the last several months has increased dramatically in size (20cm by 15cm when removed during my lap a few weeks ago). During my appointments at the hospital it was agreed I would have a lap because the cyst was getting bigger and the pain I was experiencing could have been put down to endo and this could be the reason why we are struggling to conceive (I had never heard of endo until this year). Before I had my lap I did join the endo support group at my hospital and I took my partner with me because I wanted him to hear from other women their stories because I don't think he truly understood just how debilitating the disease is. When we left I asked does he now get how I feel and he said that he did. I would encourage you to visit: endometriosis-uk.org/find-a... and attend one of those sessions and get your partner to go with you for the first one. The ladies who I met were sharing how they cope with endo and what works for them and I have found this really useful. I have also got books out from the library on endo which have been a good read.
Keep pushing for your lap. I feel I have been really lucky in getting mine, but I believe that is down to the fact I am under a fertility consultant.
Thank you for replying! Its really nice knowing im not alone and that everyone seems to have a lot of similar issues. I get such down days, and it feels like I have no one to turn to and I don't want to carry on. The way you say you were treated at the start just being put on the pill, but after they discontinued the one that worked 2 years ago I have had nothing but problems. For years I was just brushed off and told to "Just take more painkillers" or "get on with it".
The information was really useful, I showed my partner a couple of the leaflets they have, and he said he is understanding better but it is hard for him mainly because of my mood swings, it is difficult to be sympathetic when it has been going on for so long, and no matter how nice he is on 1 occasion, the next day I could snap for no reason.
Unfortunately there is no support group within over an hour of me, and the closest one doesn't seem to be having any meetings.
I haven't pushed for a lap, as the idea of it scares me and I don't want to have an op unless it's necessary. I'm self employed and if I can't work it's a huge financial strain. Is it worth pushing for?
Welcome to the forum and I'm very sorry to hear you are having such a difficult time.
Endometriosis can be very isolating and affects both physical and mental health but I am glad you found this forum where we are all here to support each other.
Endometriosis UK, the charity (as Emma511983 has already mentioned) has some useful information on their website but you may find this section about couples particularly helpful to show your partner:
If you feel you need someone to talk to, as well as the support groups, we also have a free confidential helpline, run by volunteers with experience of Endometriosis. You can find its opening times here:
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