Newbie needing help

[Nikkim96]

I am looking for some help , I have been poorly for a long time. It’s been a nightmare journey. Recently I have been told it could be endometriosis and I’m waiting to be seen. I was wondering if anyone could share their experience with the symptoms and problems they have had. Thank you

[635703]

I was diagnosed in 2006 by laparoscopy and then was well with no pain or symptoms until 2018!!

So a recent MRI shows my left ovary is stuck behind my uterus and I have a thin band of endometrium from the back of my uterus to my back. I am waiting for a laparoscopy to remove this. Will have a Mirena in too. (My first Dr wanted to give me a hysterectomy but that would only stop my periods).

I also have some bleeding from my anus around my cycle and some problems with bowel and bladder urgency incontinence - so I have accidents as I don’t always get to the loo in time. Waiting for a colonoscopy and to see the Gyno-urinary nurse.

Taking zolodex and tibilone and so I don’t have a cycle atm (zolodex is a monthly injection that puts my body in a temporary medical menopause) as they’re so painful. (Tibilone adds back a hormone and is a HRT).

Severe period pain, pelvic pain throughout the month, Endo belly or bloating and IBS type symptoms with gas, runny tummy, or constipation. Fatigue and lethargy.

Open to having DM’s from you if you wanna talk privately. Otherwise ask away.

This Endo life has a podcast and a website with fab Resources 💐🌸🌻🌷she’s also on Instagram and you can pay for a course - I discovered her yesterday 😘

[Nikkim96 in reply to 635703]

Thank you for posting. I haven’t been diagnosed as of yet. I’m still waiting to hear 😩

I have been bloated , really bad abdominal pain with flare ups , runny tummy, or constipation. I also vomiting , I have been to a gastro team they said everything is clear. I was told it is “in my head”. I’ve been on numerous of different tablets nothing has helped. I’ve been in and out of hospital.

I’m waiting to hear from the gynaecologist team as I haven’t had a period since January 2020 when this all began. I’m on the pill I have 7 day break , I use to always be on time with my periods. Then it’s just gone.

With gastro saying there nothing wrong there. I’ve have been told it could be endometriosis. So I just wanted to hear everyone’s experiences to see if their is anything similar. I’m clutching at straws but the pains just unbearable. It cripples me then I can’t do anything xXx

[635703 in reply to Nikkim96]

I am so sorry 😢 the waiting is awful but pain is never in your head - that’s pure bullshit and so damaging - it makes me so 😤 angry someone said that to you!

Sending you all the love 💗 as you wait and feel free to DM me anytime lovely - you’re not alone and you’re not crazy x

[Nikkim96 in reply to 635703]

Thank you so much. 😊

Honestly it’s been a hell of a ride unfortunately I’m not at the end yet. I was told by a consultant who I was under for 20 months it was IBS, Cyclical vomiting syndrome (CVS) , neuropathic pain. He told me to rule gynaecologist out. Even though I haven’t had a period for over a year 🙄. I eventually discharged myself from him. I tried to go private but that was just something else 🤬🤦‍♀️

I’ve now seen another gastro doctor yesterday who has confirmed it’s not CVS. Which I was discharged with from the other doctor. He said more and more doctors are advising people who have similar symptoms it’s CVS. Which to me sounds like people are being brushed off with it. As I explained to the doctor the pain does go and the other symptoms it’s constant. When it flares it goes from 0-100 within seconds.

When they said before it was in “my head”. I was put on 75mg of amitriptyline for 6 weeks after that I was put on 100mg of progablin. Neither of them have done anything. I’ve had every pain relief accept morphine. The pain relief helps ease it however after 2 weeks my body became use to them and they wasn’t effecting me as much.

So now I’m waiting for gynaecologist team to contact me. I’ve been put as urgent as another referral in April by my GP. So hopefully I hear soon. I would go private but I really don’t know if I can after the last experience I had 🤦‍♀️ Xxx

[635703]

Look at this podcast and the website is brilliant and the Instagram page

Screenshot of podcast

[Nikkim96 in reply to 635703]

Thank you xx