Fat, Middle-Aged and Suffering!

[SueBonnington]

That's a pretty good description of me at the moment. I was diagnosed with endometriosis 25 years ago, and it was treated very successfully with hormones until my periods stopped when I was 50. Little did I know that it won't leave you alone even when you're no longer fertile. Now I have terrible arthritis, my hair is falling out, and every 28 days I get period pains and awful itching and skin problems on my hands, forearms, chest and face (i.e. all the places where men have hair). Most of the time I look sunburned - quite a trick in England in January!

I've asked for an ultrasound, but I'm worried that they'll refuse to operate because I'm overweight, and it's so difficult to move that I can't shake it. I've been offered bariatric surgery, and I'm confused as to why they're willing to do invasive surgery on my gut but not on my endo. Any suggestions?

Thanks, and keep up the good fight.

[NW248]

Well they told me that I was suffering from IBS and had a poor diet without asking me one question about diet or the amount of exercise I did. They told me I needed to cut down on fat and sugar, eat more fruit and veg and exercise more. I'm technically overweight because I have lots of muscle due to work and hobbies that require strength, so my BMI and constipation was enough to convince them it was all my fault. They completely failed to diagnose my endometriosis despite my numerous symptoms.

It is also obscure that they tried to push me to have a second colonoscopy to check for cancer with no sign of it on the first one 2 years previously yet refused to do an MRI which would have shown endometriosis until after I'd taken myself to a suitable specialist and got diagnosed.

Demand an MRI, an ultrasound will not usually show endometriosis. Demand to see someone who is a specialist in endometriosis rather than a normal gynae, the BSGE list is online. My normal gynae said I couldn't be put on Zoladex because I was menopausal, the specialist put me on Zoladex and it made a huge difference to my health.

[SueBonnington in reply to NW248]

Wow - thank you so much! I'm lucky in that previous ultrasounds have shown up the cysts, but convincing a doctor that's the problem is almost impossible! I'm planning to change doctor's surgery, and am going to look up Zoladex now. Thank goodness I found this site.

[GrittyReads]

Hi, Have you been given any blood tests? The symptoms you describe could go with all manner of conditions (eg sunburn and itching can be liver/gallbladder), so they ought to check you out for all other things, as well as being more responsible and proactive about your endo. I would demand blood tests that include lfts (liver function tests) as well as ultrasound / MRI.

Nb I thought that only a laparoscopy showed the endo ... didn't know about MRI ?? But at least a quick ultrasound would rule out lots of other things, and maybe make them, then, focus properly on the endo, once bloods etc have ruled out anything else.

Also you have the right to ask to be referred to a specialist Endo clinic. Search on here for Lindle's posts, as she gives all the info you need.

Take care.

[NW248 in reply to GrittyReads]

My repeated ultrasounds didn't show endometirosis and even though they showed fluid in my fallopian tube the gynaes told me that wasn't a problem. There seems to be a problem that some medical people think it does show any sort of cyst and therefore endometriosis, so if it doesn't show anything they insist there's nothing wrong with you . If the endometriosis has got down between the vagina and rectum in the Pouch of Douglas then a lap won't usually find it unless it is done by a specialist from the BSGE list. An MRI will show it but it is relatively new that they are using MRI's for this and may be due to advances in MRI technology.

[SueBonnington in reply to GrittyReads]

Because of the possibility of immune problem I've just had a complete set of blood work done to rule out thyroid. The ultrasounds I had in Indonesia when I was first diagnosed were internal, and they showed up the cysts very clearly.

Thanks for the advice. I've only been back in the UK for a couple of years after 25 years away, so figuring out what services are available is a major headache. I'm very grateful to you all.

[Jd27]

I know it's hard to stay positive SueBonnington

And it can be so overwhelming

Before I had my lap I could not walk around the supermarket coz the pain was so bad

They said the same to me that it was to much pain for endo

After the lap my surgeon said I'm god YOU MUST OF BEEN IN SO MUCH PAIN

REALLY YOU THINK

IV OnLy been like this for 3 years I never noticed 😡

[SueBonnington in reply to Jd27]

I don't know if it's because they're so overworked, but I'm finding that GPs have already judged me before I even sit down. They're also really good at dismissing symptoms as "normal". I've been told categorically that because I'm not of reproductive age anymore there's nothing that can be done. Yeah, right. You've never dealt with an angry woman before have you mate?!

So glad you've had the lap. Hope things are better for you now.

[GrittyReads in reply to SueBonnington]

Do please, read 'Lindle's' posts, as she explains how - even in post-menopausal women - if there was endo tissue before menopause, then once that is established, it can keep on producing its own oestrogen-like compound which is enough to enable the endo to continue developing.

Also, as several have said. Ask your GP to refer you to a BSGE clinic. These are Endo specialists who know exactly what needs doing. Even gynaecologists often do not know enough about Endo,

[SueBonnington in reply to GrittyReads]

Thank you so much. I'm enjoying reading Lindle's posts. I'm in the process of moving GP - three test results lost in six months is enough for me. When I get to the new place I will overwhelm them with the knowledge I've gained from this group!

On a broader note, I'm gobsmacked that so little's known about this among the medical world. At every stage we have to tell them what's wrong, and fight like crazy to be taken seriously!