Advice? Bleeding for 51 days now - ultrasound all clear

[Lizziecotterill]

I have -

endometriosis

Fowlers (bladder disease)

Kidney reflux

Secondary anaemia

IBS

And being tested for auto immune disease

Help!

I've been diagnosed with the above for years.

for endo have had extensive surgeries x4 and zoledex, pills, potions,a tens machine.

Last few months my whole body feels twice my age (I'm 36), my back feels broken, and flu like symptoms, I get in from work and literally collapse in a heap and am so tired and my whole body hurts I can't stop it.

I've even resorted to morphine which I feel guilty for doing.......like I've given in.....

Anyways fast forward a little more I was diagnosed with secondary anaemia 3 no the ago, been on iron tabs 3xs a day since and no better, it's in my taking the iron from my stores as it's gone form my blood.

Anyways I currently have been bleeding for 51 days now, I've had a course of provera but this slowed it down not stopped it like in previous years.

I went for an urgent ultrasound but sonograoher said nothing wrong woh your womb.

Great well why is my fanny falling out!

And why have a signed yet another pair of knickers as I thought it's gone then I sit on loo and there's more blood.

Its more in the morning, ranges from bright red to dark then brown.

I believe there's something wrong woth my cervix but earliest gynae app is November.

I have been given lots of support from gp but nothing she can do.

Pain is bad But varies......my whole body hurts so much I forgot about where!

I am still working but it's has stopped me going out woth friends and done shorter shifts at work fortunately no one noticed yet.

I have tried lots of medications, hormonal, zoledex, had 4x surgeries and coil (didn't agree) implants etc. I have tried reflexology and keep that up, mindfulness as far as calming music and ASMR but not sure on group mindfulness, I also seen a oestopath with not much relief and also now seeing a chiropractor who is doing manipulations in me which seem to be relieving my back...ish....

Any help, ideas and solutions welcome.......I am so at my end....

[gemmamichael]

Hi Lizzie,

I'm sorry to hear about how you've been suffering with endometriosis and other health related issues, it sounds like you've been having a difficult time for quite some time.

While we can't offer any solutions, we always try to help as much as possible. If you need someone to talk to about anything related to your endometriosis, we do have a network of support services that are available to you. Our free helpline (0808 808 2227) is run by volunteers who also have personal experience of endometriosis. Our helpline is open most days--the times it is open can be found here: endometriosis-uk.org/helpline

You may also find support groups useful as a place where you can discuss your symptoms and issues you are facing with other sufferers. Please visit: endometriosis-uk.org/suppor... to find out if there is one in your local area. We also have an online support group if there is no face to face group near you.

I really hope you find the solutions and help you're looking for.

Kind regards,

Gemma, Endometriosis UK

[Lizziecotterill in reply to gemmamichael]

Thank you fir replying. I do feel lost, I think maybe I just go to a and e, but yet they won’t do anything as I’ve got an appointment.......

[Kelsa]

Hi Lizzie,

I too have endometriosis and fowler's syndrome. Initially I only had endo and then my bladder stopped working. I was under professor fowler's at nhnn and we tried different things and ending up with sns. This worked for a while but then I was having repeated episodes of getting it fixed and it not working. Have you had the emg test? Svt and upp test?

Also they took me off tramadol as the rare side effect of the drug in females of child bearing age is that it can cause urinery retention.

I also had secondary anemia and had a blood transfusion, 4 units and went onto iron infusions 1 week one and then 1 a week later. Then 3 months of iron and my stores are back up, so might be worth asking about.

Finally I'm waiting to hear if I can have a bother lap but will find out in a few weeks as due to now having a mitrofanoff the port holes can't go where they should and they need to go in over the spleen.

Do you find your bladder pain is well rose whilst on your periods? I find I have to catheterise but more often. X