newly diagnosed

[siren1]

hi all,

im new here, im 38 and have just been told 2 weeks ago after a cystoscopy as i was urinating a lot of blood that i have endometriosis in my bladder, i have always had painful heavy periods but just lived with it as no investigations were ever done, my gp is now referring to a gynae so don't know what stage its at ect she just said i have an unusual presentation of it as it isn't usually in the bladder, she said that there are several treatments and said about tricking my body into menopause any info /others experiences greatly appreciated

[Moon_maiden]

HiI had hysterectomy November and he had to remove adhesions all around the area including ureters.

I’ve followed a similar path of bad periods, pain etc., and coped until a couple of years ago. I was diagnosed endo Feb last year at 51 🤦‍♀️😂 go figure.

I tried Zoladex, fake menopause, helped with emotions, but not much with pain, everyone reacts differently though.

Do you know if the referral has gone to an endo specialist? If they are sure they should have done. Look at the BSGE site for specialist.

The NICE guidelines for endo are very useful. You can check with the gynaecology department to see if they’ve received the referral and who it’s gone to, seems like GP is on the ball though.

I ended up paying to see a gynaecologist as hadn’t been getting anywhere with GP surgery. If you did decide on that route initially they have the option to add you to their NHS list for treatment, as long as they do NHS as well.

Good luck, hope you don’t have to wait long 🙂

[siren1 in reply to Moon_maiden]

thanks for the reply moon maiden, she didn't state if endo specialist she just said it needed to go through gynae and that she's doing a referral and just prescribed me codydramol 20/500 mg and told me only use when its bad and to take with lactulose, i'm just wondering what what kind or side affects will happen from tricking my body into menopause like osteoarthritis etc or any others

[Heloo85 in reply to siren1]

You will get all menopause symptoms, hot flashes, night sweats, mood swings! You are supposed to have a nuclear bone scan, but good luck with that! I’ve had 4 courses of Zoladex and never had a bone scan to check for osteoporosis! You can try requesting one, I know people who’ve had alsorts thrown at them, from MRIs, to bone scans, to repeated surgery! I’ve just nearly died from sepsis due to my Endo and I’m lucky to get an ultrasound, and well, repeated surgery has never been offered! Xx

[siren1 in reply to Heloo85]

hi heloo85 that sounds awful, maybe you should ask for a different dr like i said i haven't been seen by gyne yet and dont even know if it will be an endo specialist but im going to try to find out, i hope you get treated properly its so easy for ppl to keep getting fobbed off these days

[Moon_maiden in reply to siren1]

I did have Tibolone, HRT with the Zoladex so that may have suppressed any negative affectsIf you do try it hope it helps you 🙂

[siren1 in reply to Moon_maiden]

thanks i tried asking at the gyne they referred me to last time if they have had a referral as i work in the same building and they said no so will have to ask docs when get a chance to call

[Moon_maiden in reply to siren1]

At least you found out now rather than later 🙂, you end up feeling a bit let down at times. Quite often these days GP will send a query rather than referral as it is cheaper for them. GP’s are private businesses but get funding from the CCG/gov, at the end of the day they have a duty of care to patients and follow the GMC guidelines, they have quite good ones.

[siren1 in reply to Moon_maiden]

ya only after urinating alot of blood my symptoms have been ongoing since i started at 14 and i had giving up after the last lot of tests a couple of years ago not really feeling like i got many answers, it all started when i went for my depo injection and they asked me why i was there if i was pregnant because my stomach is distended, i told them i wasn't and they said nothing is 100% i told them abstinence is but they wouldn't believe me they got another person in the room palpated my stomach put a Doppler on my stomach and made me do a urine sample, when they ruled pregnancy out they obviously went to a gp, they wouldn't give me the injection anymore until they find the reason for it and it

[Moon_maiden in reply to siren1]

You’ll be armed with a lot more info this time 🙂The forum is really useful for searches and others experiences.

I think I was lucky in a way with the first consultant I saw.

It’s a pity that GP’s are harder to convince, you’ve been through tough experiences.

[Dinah_lady]

Hello. I just came across your post and wanted to reply. I was diagnosed with endo in my bladder around 10 years ago. After 12 years of suffering with a range of symptoms (bloatedness, ibs type symptoms, painful periods, back pain etc) I then started getting a lot of blood in my urine and being in pain for nearly 3 weeks out of every month. After visiting the gp for years and being told ‘you’ll be fine if you have children’ and ‘lots of woman have these problems’ and being prescribed peppermint capsules ... finally a doctor referred me to gynae. This was after repeatedly hanging in urine samples throughout the month as my gp said the blood in my urine must have been from my period. When eventually getting an ultrasound for my ovaries, they came across an abnormality in my bladder. I then went for a cystoscopy and biopsy before getting the diagnosis. My gynae said there was no point in operating as it was too risky (and the endo was likely elsewhere too), so she prescribed Zoladex for 3 months. It was life changing. I also took HRT to help with the nightsweats and hot flushes. To be honest, those side effects are nothing compared to what endo puts you through. I was told to not be on Zoladex for more than 6 months as no long-term studies had been done at that time. However I could not bear the thought of having periods again and my nurses at my surgery did not question me booking an appointment every month for the injection... so I stayed on it for 12 months.

During that time I pretty much cut out red meat, dairy, citrus drinks and drank very little alcohol. I also took up yoga and have been doing it since.

Since then I have not needed anything more than paracetamol during my period. The endo has been very much under control and manageable since then too. I think the 12 months gave time for the endo to shrink and the inflammation to calm and heal. Endo feeds off oestrogen so it had nothing to stimulate it over those 12 months.

All the best in your choice if treatment.

[siren1 in reply to Dinah_lady]

hi again, ya they told me when i was in about 15 it would probably settle once i had children, i have 3 children and it never got better they put me on meds for a while to slow the flooding but nothing long term, so for many years i gave up even discussing it and just lived with it as i started to think maybe it was just normal for me

[Dinah_lady in reply to siren1]

Endo seriously affects the quality of life. Congratulations on having 3 children.

I am awaiting a 2nd round of ivf. No idea if it was the endo that has affected my fertility.

All the best x

[siren1 in reply to Dinah_lady]

i was young when i had my boys still in my late teens, i was told that i wouldn't be able to have anymore naturally after a test but 10 years after my second son i found out i was pregnant with my daughter, my miracle child once i got over the shock of it lol that was over 9 years ago, i hope it is successful for you x