Endometriosis Sufferer.

[helby2507]

Hi, I’m new to all this. I e joined just to be able to connect with other women who have the same condition as myself......Endometriosis xXx

[Moon_maiden]

Hi

How are you feeling with it all?

[helby2507 in reply to Moon_maiden]

I have more bad days than good, unfortunately. I’m really struggling & need help with the most basic of things, for example, preparation of food, cooking, showering, getting dressed/undressed & help with walking! I’m on the waiting list for a hysterectomy but have to have another surgery first, to separate my bowel from my uterus. My ovaries are stuck together, (which they call, “kissing ovaries”). Depending on how much of my bowel & my rectum they have to cut away, I’ll have either a temporary stoma for around 12 weeks, or a permanent one.

Do you suffer with Endometriosis?

[Moon_maiden in reply to helby2507]

Not great, thought I was struggling. Are you getting PIP? How long do you reckon for surgery? I hope your bowel isn’t too bad, but it a scary thought. How do you feel about it all? Do you get support from GP?

Luckily someone else does the cooking, the other stuff like cleaning sort of gets done.

I was diagnosed with endo last December, also have fibroids and enlarged uterus. I’m waiting for hysterectomy with removal of endo. First consultant said it was in the bowel, he removed from pelvic walls and PoD, endo specialist after MRI isn’t sure. Movement/eating is a killer. Had small bowel MRI Saturday so find out if it’s anything else other than endo.

I spoke to gynae secretary this morning for update, it’s been difficult to get a slot as they need bowel surgeon there in case. I told the consultant that I just wanted it done in one session. Less scar tissue. She was mentioning end November but said she’d get back next week.

It’s had roughly forty years to do whatever it’s wanted 🤣🤦‍♀️

[helby2507 in reply to Moon_maiden]

I really do feel for you, I wouldn’t wish this pain on anybody! It’s just a constant & endless battle, hour after hour! I’ve just got my PIP forms through, I did apply for it a few months after diagnosis, in 2018 but apparently, I didn’t score enough points! I’m hoping that this time around, it’ll be different & that having applied for it previously, that that will go in my favour! I mean, how much pain do you have to be in & how disabled do you have to become before they’ll even consider you as a suitable candidate???

I don’t get as much support as I’d like from my GP, but hey ho!

I’m on the cancellation list so it’s just a matter of luck, when I’ll be given a surgery date. The waiting list is 12-16 months, all because of COVID-19!

I really hope you get your surgery in November. My partner is amazing & does virtually every for me in addition to his job as a farm manager. I don’t know what I’d do without him.

[helby2507 in reply to Moon_maiden]

Do you get PIP?

[Moon_maiden in reply to helby2507]

I haven’t considered it as I’ve been on furlough, I’ll have to put in a claim for some benefits which is very annoying. In 36 years I’ve only claimed for two weeks and would normally have a full time job plus holistic therapies two or three evenings a week. So frustrating.

I have helped someone else with a claim. If you haven’t signed up for online access to your medical records I’d recommend it for info to send with your claim. Also letters from GP and consultant/ hospital letters. Anything and everything you can 😊. They were awarded ten years because I’d given so much. If you see someone face to face (ask for a home visit) make sure they sign a document listing everything you’ve given them. There is no comeback for them to say they haven’t received it.

It’s so good you’ve got support from your partner. I’ve worked on farms so know it’s hard work.

I’ll keep fingers crossed for you, hopefully you won’t have to wait long

[AllthatGlitters]

Hi when did you get diagnosed? X

[helby2507 in reply to AllthatGlitters]

I was diagnosed in 2018 with Stage 4 Endometriosis but my gynae consultant said that I’d probably had it for around 15 years. I’ve had pain & symptoms from the age of 18 & I’m now 42!

I have more bad days than good, unfortunately. I’m really struggling & need help with the most basic of things, for example, preparation of food, cooking, showering, getting dressed/undressed & help with walking! I’m on the waiting list for a hysterectomy but have to have another surgery first, to separate my bowel from my uterus. My ovaries are stuck together, (which they call, “kissing ovaries”). Depending on how much of my bowel & my rectum they have to cut away, I’ll have either a temporary stoma for around 12 weeks, or a permanent one.

[AllthatGlitters in reply to helby2507]

Hi it’s awful what we have to go through. I see from your post above you are trying to get PIP and so you should as it impacts on life that others can’t imagine. Think of every small detail to note down as nothing is insignificant. If you don’t get it this time then appeal. I see in the media today there is a lot about endometriosis and there is a petition online now for it to be seen as a disability which can be awarded PIP x

[helby2507 in reply to AllthatGlitters]

Thankyou, it really helps talking it through with others, every bit of support helps a great deal. It makes me feel that I’m not alone. I’m filling in my PIP forms tomorrow & if I don’t get awarded it this time, I will definitely appeal. I just hope that all the current news coverage helps my case xx

[AllthatGlitters in reply to helby2507]

I know, let’s hope the coverage does something for all of us sufferers xx

[Afrohair]

I'm so sorry to hear this endo takes a lot from us my diagnosis is quite recent but endo changed my life I haven't been able to work in a year including not being able to walk like you limping on one leg and Ive just turned 35 at the minute I'm expecting a baby which has slowed down my symptoms sadly had a misscarrige last year which I feel maybe from the disease but will never truly know I have tried my best to fight this disease and done it with my diet and lifestyle you can see a lot of my previous posts you may find some helpful good luck with your operations and I hope it helps you I really do wouldn't wish this disease on anyone I know what you mean about g.p it's hard to be taken seriously all the best x

[helby2507 in reply to Afrohair]

Thankyou so much, I wish you all the best with your pregnancy & for the future. Stay strong....us women need to stick together!!! Xx