My Endometriosis story…

[Keely88]

I’m new to this group so here’s my story. I started my periods when I was 10 years old and they were really bad from the start, irregular, I’d have 2 weeks on a week and back on again. My Mum started taking me to the doctors and they just kept saying it was my body getting used to starting my periods so early, 7 years later they did a diagnostic lap and subsequently an ablation at age 17 I was diagnosed with stage 4 endometriosis and the consultant saying it was the worst case he’d ever seen. I’m 34 now and I’ve had another 4 ablations, every type of contraction known to man, zoladex injections and HRT, prostap injections and HRT. My Gynae team where I’m from originally discharged me because they felt there was nothing more they could do as they weren’t willing to perform a hysterectomy. The last 9 weeks I’ve had constant excruciating stabbing pains in my lower abdomen, nausea all day and excruciating pain in my lower back which is completely different to how my endometriosis symptoms have ever felt. They have done scans and blood tests which haven’t shown anything I didn’t already know. I just feel like I’m being ignored and just left because I don’t want to be back and forth to A&E I’m a health care assistant and I know how busy they are. I feel like that is the only way anything gets done though. I am at the stage now where I want, no I need a full hysterectomy. My partner can’t have children and at this moment in time we don’t want them anyway. My Sister has a 3 year old and he is hard work. I love him like he is my own but that is enough for me. We have said from the very beginning that we would adopt should we ever change our mind, I’d want to do that regardless with my partner being unable to have children. I wouldn’t be able to look after a child right now so it’s quite lucky I don’t have any. I don’t know I’d have managed the last 9 weeks with a child to look after, it’s been hard enough with a cat. 😂😂

Anyway that’s me.

[CryBaby91]

Hi Keely

Gosh, being diagnosed at 17 must have been so hard! I've had symptoms from around 10 too, but I only got my diagnosis 2 weeks ago at age 30. Totally understand your feelings of being fobbed off! Can I ask, did you have any periods of relief after any laps? Particularly ones where you had the menopause injections and HRT after a lap? My symptoms are less but definitely not gone feel like I'm a ticking time bomb! Xxx

[Keely88 in reply to CryBaby91]

None of the treatments I’ve had worked at all, even on the injections and HRT. I don’t think I would’ve been diagnosed so young if it wasn’t for my Mum when I was younger.

[CryBaby91 in reply to Keely88]

Oh love, I'm so sorry. Having endo is really hard, I wish there were more effective treatments for us! Have you tried any of the alternative treatments at all? I don't want to sit listing things if you've done it all before lol. Obviously nothing is a cure but some things do take the edge off.

I'm on GnRH treatment atm after my lap, but I'm still getting pain around ovulation week and now I have some new pain around my lap holes so I'm concerned that adhesions have grown where they did the surgery. It was so sharp and painful this morning it actually woke me up! Like someone had grabbed a garden fork and started pulling. Morphine has taken it away but I feel rather pissed off that the only way to diagnose me has potentially caused MORE problems. Ugh. Like you I'm weighing up a hysterectomy, but apparently the GnRH treatments are usually a good way to know if a hysterectomy would be helpful, like if the injections don't help then the hysterectomy likely wouldn't either. So that isn't filling me with hope! This is so shit isn't it! Sending hugs xxx

[Keely88 in reply to CryBaby91]

The injections didn’t really help. My cousins wife has suffered the same and she kept going to A&E every week until they agreed to do a hysterectomy and it’s been 2 months now and she feels amazing. So I don’t know how they can say that if the injections don’t work a hysterectomy won’t. Sending you hugs too. We will get through this.

[CryBaby91 in reply to Keely88]

That's encouraging! Most of the positive outcomes that I've heard have usually been due to hysterectomy, but I've certainly heard just as many stories of women who said it didn't help. So I guess it is one of those things that are 50/50! Xxx

[claudia_91 Moderator Endometriosis UK]

Hi Keely88

Welcome to the community! It's great to have you here, and thanks for sharing your endo story with us all. I'm sure it's one that many can relate to. Sounds like the recent flare up you're experiencing has been particularly rough and I really hope that your medical team can get to the bottom of it and work on your treatment plan. Keep fighting, we're all behind you!

Take care,

Claudia

[Keely88 in reply to claudia_91]

Thank you Claudia. I’ve had Endo for 24 years and I have never ever experienced pain like this before. I’m worried they are missing something more serious.

[Cockapoo-2016]

Thank you for sharing your story.

I take my hat off to you, being diagnosed at 17 must of been really hard to take all in.

I was diagnosed last year with endometriosis and still struggling to come to terms with it, after 6 months the endometriosis is growing back again and back to getting plevis pains and been left hanging by the NHS.

You keep fighting and stay strong.

Best wishes

Anna.

[Keely88 in reply to Cockapoo-2016]

Hi Anna. It was hard to process at first. I was angry at first, especially with my Sisters both having normal periods and very little pain. I always knew there had to be something though. If my Mum hadn’t fought when I was younger it would probably have been much later that I was diagnosed. I was already stage 4 at 17 though so I knew things would only get worse. There needs to be more done for endometriosis. The doctors at the hospital are just putting this current pain down to an endo flare up but my GP doesn’t think it is. So I’m glad I’ve at least got the GP on my side. I’ve never had a flare up last 9 weeks continuously. It mentally gets easier to process and accept.

Take care

Keely.