Who would like to share experiences with me?

[Kauzchen]

Dear Community,

As a sufferer from Endometriosis myself and having had surgery 3 years ago, having had to deal with all kinds of different doctors and having learnt how hard it is to be taken seriously... I'm now keen to get to know your stories and learn more about the different ways this condition can take, and what paths you took in order to get better.

I'm a Master's student at UCL doing Documentary Filmmaking, and would be so curious to learn more about other women's stories who lived through similar struggles like I did. Who would like to share their story with me, and first of all only talk and exchange experiences? It's so important to spread the word and talk about this matter, the more we talk the more we educate the more we can help each other.

I'd love to hear from you,

Thanks for reading through this!

[thara9643]

me.

[Mavern]

Hello Kauzchen,

Good luck with your Masters.

I am not sure if I have Endo, I am new to the site (joined today).

I am 54 years old. I have suffered with many unmanageable things throughout my life, all of which many doctors told me they could find no reason for. I had always decided that once the pain got too bad to manage that i would get a hysterectomy. I managed to do that at which point the biopsy found Adenomyosis. After that, again doctors were not interested in listening to me or helping, as the pain was still there, which was weird really. I had another op. 3 years after my hysterectomy, and it seems that there may be endo stage 4. So things were stuck to things, they scraped stuff off my pelvis, they removed scar tissue. I think this is the first time there was anything actually looked at.

I have many things that have been very difficult.

1. Hormones run rampant. This affected my whole life. Work, relationships. 3 divorces, many jobs, many many relationships. lots of unhappiness in myself and with others. No way to explain to people why, mostly they don't care anyway, why would they.

2. 3 lost babies, difficult to get pregnant, and when I did they grew wrong and I became anaemic. Lost the first at 4 months to the day, so had to then have the scrape.

3. Unbearable Pain, 9 our of 10 on the pain scale, I didn't faint. I was taking upwards of 30 Ibuprofen a day

4. Back pain, still have this one. Worried about it

5. Bowl pain, still have this one. Worried about it

6. Mirena - why would anyone inflict this on another person. I suspect that the combination of Mirena and Adenomyosis was not good. But hey, the doctors kept telling me that this worked fine for other people. Which didn't seem to mean they looked into why it didn't help with me. I had a year of every difficult Progesterone allergy there is before I could convince them to take it out. Along with heart murmurs for weeks when put in and taken out.

7. Sex, I have had to give up, its excruciating. But hey, I am old, who cares right.

Next I have yet another appointment with a Gyny that I am sure will also result in them not giving a damn and sending me away. At least I am hoping that I get a definite on the Endo. That's in May, Plague permitting. I am hoping that this will mean I can push to have my back and plumbing looked at. I expect that will be a nightmare, as it all has been.

On a positive note, no one thinks I am making it up anymore.

Some things I would like the world to think about

Mirena (UID) and Adenomyosis, consider why the patient is suffering.

Hormones and Endometriosis, think twice before insisting on HRT.

Pain is not something to be ignored just because someone else's is worse.

If the person has Endo, or is suspected of having Endo, then see how far the damage goes, and where.

If you cant find something on a scan, doesn't mean there is nothing there.

If you cant find a lump, maybe there is another problem.

I have many other things I could talk about, mostly about the inadequacies of doctors and diagnosis.

Anyway, good luck.

Diana

[Kirstt23]

Me