Just joined the endo club...

[JustJoinedTheClub]

Not really sure what I want from this post, but I am so tired, anxious, devastated and have cried so much over my recent diagnosis of stage 4 endometriosis at the age of 33.

I feel so helpless as NHS waiting lists are so long, it feels so unfair that they have dropped this news on me and expect me to wait so long for a follow up appointment. I know I am one of the lucky ones in that I don't suffer with the excruciating and horrific pain that I keep reading about from other people. (I have a heavy flow for the first two days of my cycle, sometimes painful and sometimes I get brain fog, but it is not every period so it is manageable). But going from being fine to one month later, being told that I have a severe chronic condition which will affect my fertility has been really hard for me to process.

The first sign I had anything wrong was when my stomach bloated up one month ago and I was in severe pain. I ended up going to the hospital where I was put on IV antibiotics and a two week course of oral antibiotics. The stomach pain and bloating is completely gone and I have had a normal period since that episode, but they wanted to do an MRI scan on me as a follow up which revealed endometriomas on both ovaries, thickened uterosacral ligaments, endo in my pouch of douglas and suspected blood in my fallopian tubes. I am so terrified as one consultant very casually told me that he would remove both fallopian tubes if he sees they are damaged. He then threw in that IVF was an option for me, like it is a guarantee.

I don't know how to cope with this. I really wish this was not happening to me and finding it so hard to live normally now, I am completely consumed by it.

[Chartolfrey]

Im sorry to hear this. Endometriosis, adeomyosis is so hard. I finally got diagnosed in jan due to lap surgery but they couldnt do anything as was so bad. 6 weeks later i had a mri which shows severe endo, adeo, fibroid in the womb, 2 endemeteiomas. We saw pics its like a war zone. Ive now been told only hope is full hysterectomy and in may i signed consent forms to be told upto 12-18 months.Im only 37 but yes i already had kids young, it messes with your head and you feel so lost. Since jan i dont feel like me anymore.

Try not to be to hard on yourself, this isnt our fault and hopefully u have family and friends for support

[JustJoinedTheClub in reply to Chartolfrey]

Thank you for responding, it's nice to know I'm not alone in this. Sorry to hear you are in so much pain and that you're facing such a significant operation xx

[Sunset-lady]

I have exactly the same as you but I was diagnosed at 50 when they tried to do a hysterectomy and found it all fused through stage 4 endo which they believe I will have had for probably over 20 years. Having knowledge is good. Once you get over the shock you'll be able to move forward knowing what's best for you. I stumbled along and put myself in situations that I would never have done if I'd known about my condition. Luckily at 35 I took things into my own hands and embarked on healthy eating and exercise which massively helped until peri menopause hit me like a truck and everything flared. My advice would be to put your fertility first if you want a family. Use this diagnosis to inform you and read about how to eat well to prevent flare ups. Look after yourself and be kind to yourself. If I'd known earlier I would have been much kinder to myself and told a few bosses to go f**k themselves when they suggested that I was making a drama out of my period.

You can move forward and make the best choices for you. It is a life long disease but we can support our bodies xxx

[JustJoinedTheClub in reply to Sunset-lady]

Thank you for responding. Nice to hear your positive mindset. I know I need to be kind to myself but it is really hard. Everything happened in a space of a month, it has been really hard to process. I'm grieving what my life was before this diagnosis. I'm constantly worried and on the verge of tears, and scared about my fertility prospects. Xx

[Sunset-lady]

You are right it is grief, and grief is a process which you'll work through. It's hard but at least you can take control when you are ready. Good luck xx

[BloomingMarvellous]

Hugs . It’s a shock. Take time, pause and remember you will always be you Endo or not. Be kind to yourself, take time to grieve this.

When you are ready read this and take small steady steps : Heal Endo by Katie Edmonds