DESPERATELY IN NEED OF HELP AND GETTING NOWHERE

[eloisejm]

Hi all, I'm really struggling with my queried endometriosis symptoms lately, to the point of being in constant, life minimising pain and I'm so tired of being dismissed by my GP. I've been referred to gynae, but I've heard nothing yet, and they've attempted to do nothing in the meantime, despite promising me a sort of follow-up appointment to get a management plan sorted. Every time I go my symptoms are met with some sort of lack of understanding or dismissal, I even had a doctor shake his head at my partner when he described what I was going through (who was advocating for me due to how worked up I get going to see a GP about the same thing quite often with little success in receiving support), to which I proceeded to cry begging to see someone else that would actually hear me out and help me.

No pain relief I am able to take (the basics) are working and after suffering with progressive symptoms for 4 years now, I'm honestly losing hope. My pain is taking over my life that much that it feels serious to me, and as I also suffer with another debilitating illness, this on top is making things virtually impossible without consistent support. Has anyone else been in the same position? If so, is there any advice you can give?

[PINKSHRIMP456]

Hi so sorry to hear about your situation.It took ten years for me to get a proper diagnosis that I had endometriosis, for years the doctors have said it was POS, but the symptoms were not quite right. I changed doctors and I told them what my symptoms were. I very quickly got to see a gynaecologist and had the laparoscopy last September. I honestly have to say it wasn't very pleasant and I was in a lot of pain and discomfort for a week after it. My periods got a little better but I'm going back to the doctors again tomorrow as again they have started making me feel so poorly.

What are your symptoms?

I am stage three. My friend is stage four.

Endometriosis is awful but I just thought for years it was normal to be in pain.

Women's health problems are not very important to most doctors and it's very hard to find a doctor who actually understands women's health.

You either must change doctors or really keep telling them that you need to see a gynaecologist.

Best wishes to you ❤️

[eloisejm in reply to PINKSHRIMP456]

Thank you so much for replying. I’m so sorry to hear that you’re also struggling and that you need to go back. It really is so rubbish what women with reproductive system issues have to go through to be heard and even to have some sort of management.

My symptoms are really strange. I have IBS symptoms, including painful bowel movements during my period. I get a lot of pain throughout the entire month, weirdly I find it worse after my period and around ovulation (my pain during menstruation is more of a different type of pain, think of a horrid “pulling” ache). My pain is largely in my right side, particularly effecting my lower back, lower abdomen, hip and groin, sometimes affecting my leg and knee also. It gets really bad. It can also go up to my upper back around and below the shoulder, which I have discussed with the GP too as that was slightly worrying. My periods themselves are quite heavy, not to the point where I’m constantly bleeding through or anything like some women go through, but I have large and frequent clots and what I call “thick” periods. They last 9-10 days most months too. I’m super drained during my heavier days and having OCD also, with my hygiene being massive, I find my period triggers off that too so it’s a HARD 10 days.

Sometimes I wonder if it is endometriosis, or if I’m just going mad. I’ve had a scan to check for an ovarian cyst and recently had one to check for a kidney stone too (I’m hoping this comes back fine). The scariest thing is there being no explanation. The pain really affects my life, especially with the OCD as said, and I have Overactive Bladder Syndrome too which I find to be affected. I’m super bloated during ovulation especially and I just feel like there’s pressure on my bladder!

I really hope you get more support and as women we eventually get to a point where we get the understanding ear we need and simply deserve!

[Endolemon]

hello,

If you are in pain ask for prescribed painkillers. Try another GP if one refused.

You can write a diary of your symptoms and bring it to you Gyne consultation .

Go private if you can afford, it will be faster process. 💛

[eloisejm in reply to Endolemon]

Definitely going to keep an up to date diary! I have my symptoms of my period tracked every month, but I’m going to be more specific with in between too as I get symptoms cyclically!

I so wish I could afford private health care! I’ve definitely considered it more and more the worse I’ve got, it’s so tricky navigating multiple health issues.

Thank you for your response, I hope you’re doing ok.

[Endolemon in reply to eloisejm]

I will have hysterectomy in March finally (was waiting for 10 months ) 😬think only because my Gynae have listened to me. I told him there is unbearable pain, I am always anemic and don’t live at all (maybe one good week in a month).

It was a long journey before . Took few years to diagnosed. First they try Mirena- not work, after Prostap, which cut your pain and bleeding while taking but you have side effects.

All the time I feel so tired and have a feeling I live in toilet 😂because one problem or another.

So try to explain to your Gynae that you REALLY need some help 💛

[eloisejm in reply to Endolemon]

I’m sorry it’s taken me so long to reply. I know the feeling of constantly being on the toilet!!! I hope your hysterectomy was positive and that you’re recovering well.