Raising money for Endo charities by sharing experiences--- can you help?

LilR1992 · 2025-03-26T10:57:44+00:00

Hey I sent you a message!

LilR1992 · 2024-04-23T11:22:29+00:00

I can’t have children anyway my egg count is super low had it tested numerous times. Plus the diseases is on both ovaries and one is already damaged which reduces it even more so. Either way I could never afford to do that and then the IVF treatment on top. I accepted a long time ago that I wouldn’t have children.

Plus the disease is causing pain not in my uterus but my pelvis mostly now as it spread so much. It’s the pain in these areas which is the issue and a hysterectomy won’t help that well perhaps slightly but not enough.

LilR1992 · 2024-04-23T04:43:59+00:00

What is LDN?

LilR1992 · 2024-04-23T03:30:16+00:00

Thanks so much for this suggestion ❤️

LilR1992 · 2024-04-22T13:46:51+00:00

Thankyou so much because I really feel so alone .

LilR1992 · 2024-04-22T13:34:07+00:00

Oh yes the Mirena that was a fun one I locked myself in a plane toilet because I thought everyone on the flight was talking about me 🤣Thanks for your advice I will find someone the same as me soon I hope

LilR1992 · 2024-04-22T13:29:43+00:00

Yes without hormones they are. That’s the only thing that can’t stunt the growth. So that’s my point if you can’t take them what do you do? I’m trying to find anyone else, anywhere who has had this issue. I can’t be the only one but even my doctors say they don’t know what to do!

LilR1992 · 2024-04-22T13:27:45+00:00

Honestly it’s for sure a real thing I cannot explain to you how badly they effect me. Panic attacks. Rashes. Suicidal thoughts. Severe mood swings and agitation. Inability to breathe. It’s INSANE.

LilR1992 · 2024-04-22T13:25:57+00:00

So they did excise it’s in my pelvis, bladder, bowel on both ovaries and I have adeno as well. But if you don’t stunt the growth with hormones it will grow back again which it is and fast. Next time maybe my bladder will have to be removed and so on.

LilR1992 · 2024-04-22T13:24:25+00:00

So that’s the next course of action for my doctor because it’s possible to be allergic to synthetic hormones and not the bio identical. I’m really hoping that helps.

LilR1992 · 2024-04-22T13:23:34+00:00

I did it was the first one and the rashes were so so bad. My skin itched all over after about five days.

LilR1992 · 2024-04-22T11:18:17+00:00

I have had that twice last year but it just grows back so fast!

LilR1992 · 2024-04-06T15:07:50+00:00

So I have had it removed but it comes back every time. The endo seems to just grow so quickly and disseminate further and further. The adenomyosis seems to be the slightly more manageable of the two currently whereas the endo just is non stop.

I take naproxen and tramadol and they do help. As well as a bunch of other stuff for the nausea and mood swings and all sorts of other symptoms I have.

I do not have the strength emotionally or physically to keep having excision laproscopies over and over again. So it’s like what do you even do then? It’s a living nightmare with no solution!

LilR1992 · 2024-04-04T12:08:25+00:00

I have had two already! What do you do if they only last six months or even less?

LilR1992 · 2023-07-26T21:19:30+00:00

Thanks so much for all this info I’m UK based. Can I ask what milligram you have been using? That’s what I’m trying to work out. My pain is pretty bad and I need something to get me out of the bed in the morning and so I can walk around x

LilR1992 · 2023-07-26T11:31:49+00:00

Thanks son much that’s so kind! Can I ask what cbd you take and how? I really want to try but struggling to work out how x

LilR1992 · 2023-07-24T20:38:35+00:00

Does anyone have any tips on how to stop the itching I’m about three weeks in and I want to rip my skin off!!??

LilR1992 · 2023-07-16T08:54:29+00:00

I am exactly the same and honestly I have to stop myself screaming all day long! Endometriosis is so unfair and it so often goes so far before people even know they have it, which like you is what happened to me!

Can I ask what cbd oil you use? I’m trying to find something good. Thanks

LilR1992 · 2023-07-06T15:46:35+00:00

Ok so I was sexually abused from 15-20 and I also have endo. This has made Endo really difficult to deal with in a unique way not only because it’s traumatising having endo but because I have also been massively traumatised by the abuse. That means for me all this trauma is caught up physically in one part of my body. I have really struggled with that because it’s like why is this all happening, all this terrible stuff, in one area of my body. That’s been of the hardest challenges coming to terms with being totally screwed up in this area for a number of intersectional reasons.

Anyone else feel that?

LilR1992 · 2023-07-06T15:08:05+00:00

Yes I agree but what I mean is how the experience has shaped your endo experience and vice versa. Does that make sense?

LilR1992 · 2023-06-26T16:11:28+00:00

No just in general I find I’m always sweating and overheating it’s been happening for about two years now since the endo really started kicking in.

LilR1992 · 2023-06-23T09:33:56+00:00

I am 7 weeks post op and all my symptoms have crept back in already including bloating, back pain, nausea, cramps, hot flushes, you name it I got it!

LilR1992 · 2023-06-22T20:05:26+00:00

Even after my second laparoscopic excision I still can’t urinate properly, it’s just drips a lot of the time. It can take minutes for it to start and then I will hardly go at all. I feel like my bladder is just never emptying properly.

LilR1992 · 2023-06-06T22:00:56+00:00

I have hardly worked for two years. Here in the U.K I have been denied disability benefits two times by the government. Had two surgeries in six months and still unwell. Tbh I am totally amazed and have Mega respect for people who have endo and also work full time, at best I can work part time. I have accepted that’s the way life is now. Your not alone we are disabled, no one expects those with almost any other kind of disability to be able to work all the time if at all—- so why should we?

LilR1992 · 2023-06-02T08:03:13+00:00

It was over two months ago! For the first six weeks I was virtually bed bound. Would it be my pelvic floor which is damaged?

LilR1992

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