To ask about long term endo sufferers

7 replies

Jasmine00 · 28/12/2021 09:54

I was diagnosed last January with endo as I have lesions in my vagina that are typical of endo.
For a year prior I had had a sharp pain in my right side that reminded me of when I had appendicitis (ive got mine out) scans all fine, nothing to show and pain went away .
My symptoms weren't so severe at this point apart from very heavy periods so i decided to just go on as I was, the only thing the gynecologist offered was the mirena coil.
Now a year on, the pain isn't bad but my bloating is awful and im suffering from terrible hormonal acne and im experiencing pains all cycle- shooting pains, siatica nerve pains, pains from my tubes etc. Again its not severe but its definitely noticible.

Ive got a phone appointment with my gp next week, did the mirena coil help your symptoms? Should I be pushing for a laparoscopy at this point?
Thank you

OP posts:

BeLessMe · 28/12/2021 09:59

Mirena caused me to spot and bleed for the whole time I had it in. I was begging for it to be removed for several months. Gynae then made me try P.O.P and that was the same.

I only had a lap because, after 5 years under gynae, I broke down and sobbed about how it was affecting my life. It used to make me laugh that the waiting room had posters saying “you don’t have to put up with painful periods… you don’t have to live with heavy bleeding” 🙄

Original poster

Jasmine00 · 28/12/2021 10:03

@BeLessMe

Mirena caused me to spot and bleed for the whole time I had it in. I was begging for it to be removed for several months. Gynae then made me try P.O.P and that was the same.

Are you just living with endo for now then? I had awful periods when I was younger and endo runs in my family, I also took 3 years to conceive, but the first I heard any medical professional mention endo was last year age 35 after 3 kids!! It would have made so much sense to know about it before

OP posts:

rookiemere · 28/12/2021 10:09

I've been on cerazette for 10 years with no breaks in between the packets and I've been pretty pain free for all that time ( apart from when Cerazette was replaced by a generic brand that was allegedly identical). Pushing for a laparoscopy is a good idea as at least you'll have a diagnosis, but I suspect that waiting times would be horrendous at the minute as it's not a life threatening illness. I was lucky and had private insurance through work.

FateHasRedesignedMost · 28/12/2021 10:53

I’d push for a laparoscopy and excision surgery (usually done as a day case).

I have stage 4 (severe) endo and over the last 15 years I’ve had 3 laparoscopies to remove it. It often grows back but you get a few years pain relief in between (usually).

My last lap was with a private endo specialist as the NHS waiting list was too long and we were TTC. She did an excellent job, removing all sorts of adhesions and endo cysts (which didn’t show up on ultrasound!) and I got pregnant within 2 months.

Angrymum22 · 28/12/2021 10:56

I was diagnosed with endo in my late 20s. Had zoladex and surgery to treat it then after having DS in my late thirties I had Mirena coil fitted. I can honestly say that it changed my life. Yes you experience spotting for a few months but compared to 7 days of flooding/haemorrhage every month it was nothing.
I had very severe anaemia during pregnancy due to long term blood loss over the years of endo. I had not realised how bad it was because my body had adapted to chronic low iron levels.
Mirena wasn’t available when I was being treated initially. The damage endo did resulted in multiple miscarriage and years of suffering.
Life definitely started at 40 for me.
It doesn’t suit everyone but the spotting does stop after 6 mnths then you often remain period free for up to 4 years. Having it fitted is uncomfortable but no where near the day to day pain of endo itself.

Change123today · 28/12/2021 11:01

I was diagnosed with it 22 years ago - I was being treated for a ovarian cyst and during lap Endo found and treated. I then needed a laparoscopy roughly every 5 years to remove endo. I have a lot of internal scaring now apparently. Suffering from heavy periods with short cycles, pain and bloating :(
7 years ago following on from another lapscopy I had the mirena fitted. For me it was life changing. Took about 6 months to settle interment bleeding etc but once settled I could live a normal life. No longer going to bed with a child’s pee pad! Worrying about flooding and no more pain.
I had the second one fitted and no six month settling needed worked fine.
I know the mirena isn’t for everyone. The one thing my consultant said to me was don’t Google and give it time. I think because before I was in so much pain heavy bleeding six months of light bleeding on/off was a walk in the park!

BeLessMe · 28/12/2021 11:31

Are you just living with endo for now then?

Nope. I begged and begged -again in tears- for a hysterectomy. There were days I literally couldn’t leave the house every month due to pain and bleeding.

Happiest day of my life going to down to Surgery. No regrets.

I have a friend who was in the same boat, she also had a hysterectomy, life has improved for both of us.

Flip