Feeling lost

[Lucylocket2]

Hello everyone,

I am new to all of this, but I thought I would give it ago, now I know I am not alone.

I was admitted to hospital in October with really bad back/abdominal pain , they kept me in for 5days did scans and x-rays , I was sent home with antibiotics and lots of laxatives,But was no better, so I saw my doctor and they said I had an infection.

Still this so called infection would not go.

I was admitted to hospital again in November, where more scans/ x-rays were done, they said I had blood in my urine and yet another infection, I was sent away with more antibiotics and even more laxatives.

I saw my doctor a couple of weeks later and was sent for an ultrasound where they said I had lots of fluid and they couldn't see my left ovary, I was then booked in for a laparoscopy in January where they said I had 2, minimal bits of old endometriosis that they removed and was sent on my way again .

They booked me in for a colonoscopy in February because they said my bowel wasn't working, but I had no problem going to the toilet.

But I had the colonoscopy and that was completely clear, as was expected.

By this time I had been off of work for 4 months and in pain ever day .

My doctor gave me a prostap injection in March and it did nothing at all, I then had a major onset of pain again in may and ended up in hospital again for 3 days.

I had another xray and an ultrasound which showed I had lots of fluid and still no left ovary , but no one wanted to do anything, I was passed around to so many people I didn't know if I was coming or going.

I was finally allowed home but in as much pain as I went in with, it was that bad I couldn't walk and was even wheeled out in a chair.

They gave me 3 lots of antibiotics and said I would have a follow up appointment (still nothing). I left the hospital and went to see my doctor, she was disgusted that they had sent me home in the state I was in, and told me to stop taking the antibiotics because I had no infection at all. And she referred me to private care.

In the meantime I was told I had a b12 deficiency and was having injections for that, and was told that's why I was so tired all the time, after my 4 injection my results came back from Southampton with no problems and no b12 problem, so was told just to have the last injection anyway, so no explanation of why I was so so sleepy.

I have now been seen privately and definitely feel like I am getting somewhere at last, i had an ultrasound and my left ovary was found at last but was really high up , so was in really bad pain for 3 days after. I am booked in for a laparoscopy again in September so he can have a good look around. I was prescribed synarel nasal spray about 3 weeks ago and my pain had gone completely🎉 I was so so pleased, although I still feel really sleepy.

I woke up yesterday morning in pain again,even tho I am still on my nasal spray, it's worse on my left side, I don't know what's going on. Has anyone else used this spray,??

Thank you for taking the time to read my story so far 😀

[Hidden]

Hiya Lucy, you're definitely not alone!!

I've never heard of the spray, I'm presuming it's for pain relief?

Sounds like you've had a horrible time of it although I'm so pleased they found your ovary! I'm hoping the laparoscopy will give you some answers too so you know why the hell you're feeling like you do.

Katie

[Lucylocket2 in reply to Hidden]

Hello Katie,

Thank you for your reply, the spray is to stop my ovaries working its similar to the prostap injection, just faster working.

Definitely has been doing its job for the pain, although they are finding it hard to get my next prescription in, hopefully it will be in by Wednesday.

Have you been taking anything? And has anything been done to help you?

LuCy

[SusiePg in reply to Hidden]

Katie, so sorry for yr Endo journey, you are not alone and post anytime you are feeling stuck with the pain. I had the nasal spray and it helped at first like you. Then I went on Zoladex and had to have the injection every 3/4 weeks as it didn't last a month. Can you consider the injections? X

[Lucylocket2 in reply to SusiePg]

I am only having the spray till my laparoscopy in September and not sure what the plan is then, I did have prostap but it didn't do anything for me.

A friend or mine had Zoladex and said it was great, but since then has had a hysterectomy.

Was your pain all the time too? X

[JeanOsborne]

Hi Lucy, where do you live?

[Lucylocket2 in reply to JeanOsborne]

Hello Jean ,

I live in Swindon 😃.

I was just reading your story, my womb tilts backwards too, the hospital didn't seem to fussed by that before, and I had forgotten to mention it to my private doctor, is that common with endometriosis?

[JeanOsborne in reply to Lucylocket2]

Will pm you.

[Hidden]

Hiya Lucy,

I'm new to all this but googled your spray so now know what it is haha!

I've had a 3 month injection of triptorelin which runs out this month which I'm dreading as I don't want the pain to come back. I stopped my HRT tablets as they sent me loopy! But I had my lap 2 1/2 weeks ago to get rid of my severe endo and cysts etc so me and the hubby are going to start ttc as asap.

Fingers crossed for weds!

Katie x

[Lucylocket2 in reply to Hidden]

Hey Katie ,

Not many people have heard of it to be honest with you, it definitely helps with the pain, but not the tiredness , that Is still at large.

Hey makes me a little loopy too.

How are you feeling after your laparoscopy?

I have 2children, so not planning anymore, so not sure if I will have a hysterectomy or not yet .

Lucy x

[Hidden in reply to Lucylocket2]

I feel tired a lot of the time but it comes in fits and bursts. Is your fatigue constant?

I'm feeling ok after my lap but to be honest I'm torn. Torn between wanting to a last push to try for a baby and felling like I have nothing else in me to offer.

How do you feel about a prospective hysterectomy?

xx

[Lucylocket2 in reply to Hidden]

I am tired 90% of the time, I am like a sloth.

Oh no that's not good, do you have any children or will this be your first?

I am completely fine with having a hysterectomy, but not sure if it would be a full of partial, I have been having bad ovary pain on my left side (my problem hiding one), so unsure if that is causing additional problems too xx