Bowel Endometriosis - So sick of it

[MissSharma]

Just wanted to have a bloody good moan

I have endometriosis and adenomyosis. I've had 2 laparoscopies to relieve my frozen pelvis due to the adhesions, remove endometriomas, remove a bowel stricture and excise endometriosis from my bowel.

If i'm completely honest, I still haven't got over the trauma of it all - the utterly disabling pain,
being fobbed off for 7 years by my GPs, putting on a brave face until the pain took me to A&E, then the two weeks of hell
before surgery while I was put on the cancer fast track pathway because my blood tumor markers were sky high, the utterly crushing slow realisation that I'll never be able to have children...

I control my endo now with the mini-pill, which I take back to back to stop my periods. But occasionally I forget to take it, and if I forget for just two days - bam, my bowel endo decides its period time. I start bleeding from my bowel, and the pain ranges from uncomfortable, to fucking excruciating stabbing pain in my rectum - they call it javelin arse because that's exactly what it feels like.

I hate it. I hate myself for being an idiot and forgetting my pill for 2 days which allowed this to happen. I hate the thought of the damage that it's doing to my bowel, and what it might mean in the long term.

All of it - I just hate it and I want someone to hold my hand and tell me they understand. And now I've made myself cry!

@MissSharma I am so sorry to hear of all your pain and losses. That all sounds totally shit and I can totally understand why you would feel the way you do. Living with pain is horrendous and you are facing that on a regular basis. As well as the loss of a planned/hoped for future. My heart goes out to you and it is shocking that this condition is so under diagnosed.

I don't have endo but do have a close friend with it. She had also had two interventions snd lives knowing more might be needed. Hers was undiagnosed for years but she did get treatment and has gone on to have children. Do you know for sure if that's not a possibility? Have you had referrals to appropriate clinics to investigate?

Can you get support for your pain, concerns of fertility and maybe counselling just to work through some of these feelings?

You are totally valid in your feelings snd to have a moan. Also to reach out to others who may have more direct experiences. Hope some other posters come along and can offer support or share their stories. Take care

I’m so sorry. I also have endo and am suffering today, so sending love and hugs. Javelin arse is the worst.

I hate it. I hate myself for being an idiot and forgetting my pill for 2 days which allowed this to happen.

You’re not an idiot. You’re dealing with chronic, debilitating pain from a horrible disease. It affects everything, including memory and thinking. Of course you forget to take it sometimes. I forget my head sometimes. Please try to be kind to yourself. You didn’t ask for this, you didn’t allow it to happen and it takes huge strength to advocate for yourself despite being fobbed off by healthcare professionals.

Have you been in touch with endometriosis UK? I believe they have an online chat function now. I would also recommend the Endo and Endometriosis subreddits which have been a huge support to me throughout my journey to diagnosis and beyond. I can relate to the trauma side of things and I wonder if counselling might also be helpful, if you aren’t having it already, to talk it through with someone.

Be gentle on yourself today. Lots of self care if you can - heat pad, your favourite drinks and snacks to hand if you can eat, film if you are able to concentrate on one. I hope it starts to ease up soon and you can get some relief 🌹

Thank you both so much, it just helps to know someone is sympathetic. I occasionally tell my family I'm suffering but I dont think they have the first clue about what it really feels like.

@BSky - yeah I'm sure I'm infertile - one of my tubes was damaged the last time they checked. Then post surgery, I stayed off the pill for a year or so to try to conceive. But the bleeding was so bad, and I was really worried about the damage it was doing to my bowel. So I decided to give up. I've been on the pill ever since. I've shut the door on that part of my life, and come to terms with it.

The pain is better today, but the bleeding has been horrendous.

My heart goes out to all the other people suffering with Endo xx