The never ending saga

[Endo19]

Hi all,

New to this forum but not to endometriosis, cut a long story short:

1. Excruciating pain since periods started at 15, heavy bleeds, inability to function, long and drawn out cycles used to be up to 14 days sometimes. Bleeding through clothes, bedding, pale skin loss of appetite all became very normal.

2. Diagnosed at 21 would you believe after being told for years I just had bad periods, breaking point was when I went to the bathroom and pulled the towel rail out of the wall with screws in agony whilst trying to make bowel movement.

3. Scared to number1 or number2 during period it was agonising.

4. Scared to go out as I would often go through clothes despite using tampons and towels at the same time.

5. 4 laps later and periods being stopped for some time ( which started a whole new set of symptoms) biggest one not feeling normal without bleeding and a constant bulge from bloating every day oh yes and pmt didn't go away even though I didn't bleed.

6. Now 31, 5/6 years since last op and it's worse I guess with age it will be migraines, pelvic pain, strange coloured bleeds, fatigue through the roof and now the fear of infertility every month is painful in different ways. Due back to gynae in sept who will say you need to get pregnant to which I will say but I can't!

7. Summary - you are not alone, a strong independent women that just wants to get through each month without having to feel like my insides are destroying me. My body doesn't support my mind anymore and it's so hard to be a. Understood and b. Helped.

Just wanted to share with you all, your not alone and it's so hard and I have concluded that if you don't have it you really won't understand. Amount of times I've heard yeah I have bad periods too they last 4 days I've wanted to scream! Hope this brings someone some comfort, somewhere.

Xxx

[Endo19]

I had relief for the first 3/4 years after the last opp then came off the mini pill and slowly but surely it started to rear its ugly head again, personal circumstances and I guess denial for a long time hoping it would just go away. It is a physical disease but the physiological impact it has is deep. I'm in Yorkshire and was confirmed with severe Endo at 21 I'm now 33 and trying to conceive which is proving difficult. The growth was all over the uterus and womb, the symptoms are just like they used to be in expecting the gynae to confirm this and possibly result in another laparoscopy this year. The one thing I dreaded doing again but to gain quality of life again more then anything else this feels like the only option. Currently life is hard weeks off work every month and bed bound isn't something I can keep doing anymore, so no more denial I guess.

[Endo19]

Thank you lindle that's really helpful. I'll look into your suggestion still got a two week wait before seeing the gynae.

[Endo19]

I cannot believe I have lived with this condition so long and this is the first time I've heard of pod Endo and can completely sympathise with the feelings and symptoms. What I don't understand is why none of my gynae said picked this up. The pain going to the bathroom was the biggest reason for my referral alongside lengthy and painful periods. Thank you so much for opening my eyes to this and I will be discussing at my next appointment. Do you know if thus type of Endo effects fertility also?

[jvg69]

Blimey I always thought it was the other way around Linda, Gynae first and obs as an 'add on' !!

[Endo19]

Please advice

[Endo19]

Hi lindl

Following your advice have come across Dr trehan at the spire a specialist in dewsbury. Considering I already have an Nhs referral coming up in September I think trying to get the go to refer outside my postcode is going to be a challenge after a really trying day in pain I am now considering going private if they can get me in. Interesting that when I was given the option of choose n book the spire didn't even appear and I thought postcode referral was long gone.

In desperation I did call the surgery today and I am expecting a go call in the morning, any advice you can give would be appreciated.

Thanks

X