Trying to get a diagnosis

[MrsF2020]

Hi,

I’ve had bad periods since I was 10 was put on the pill at 13 and given pain killers but was told by doctors it’s normal. This was after telling them I wear two night time pads as well as a tampon and I still flood. My periods have always been painful that makes me nauseous and doubled over.

In my 20s I was hospitalised for a grumbling appendix but it was never investigated. I’m now 34 and 2 years ago I was hospitalised due to severe pain which they thought was my appendix and they did a CT scan which showed my caecum and ascending colon was ‘thickened’ which they then atributed to colitis. I had a colonoscopy which did not show any ulcers or thickening inside and therefore it was not explored further. Since then I’ve always had pain there particularly when I ovulate and on my period or when I’m stressed! My doctors say I have ibs, but there are times when I feel like a hot poker is up there.

Sex has always been painful again I was told it was ‘normal’. A few years ago I skipped a period and was in a lot of pain so they sent me for an internal scan. It showed I had cysts on both ovaries measuring from 2 to 3 cm the scan person said it was PCOS and told there was nothing they could do. The thing is I’ve had regular periods (my cycles are 19 days) and I’ve skipped 2 periods all in all. As I’ve quietly celebrated them! 😂

A month ago, I was at work and I went to the toilet and a whoosh of blood came out and I thought I was on my period and went back to work. Ten minutes later I nearly collapsed because of the pain and was sent to the hospital who told me I had a UTI infection. This was despite them pressing on my left ovary and it was so painful I screamed. I went to the doctors who sent me to the hospital for a kidney scan, bloods and scan was normal. They then told me to contact my doctor for a internal scan.

I have my scan tomorrow. I’m in so much pain, I’m exhausted, I can’t sleep, I was bleeding 4 days before my period arrived, it’s still heavy. I can barely work. I have huge clots and tissue but I thought everyone got them. I realise now that they don’t.

I guess I just want to vent as I know I have a battle with the doctors. I just hope the scan shows up something tomorrow!

[Moon_maiden]

Hope all goes well with GP, don’t let them fob you off. The endo UK site has info on consultations and tackling them, may help.

Venting is good at times and most will relate to what you’re going through, I know I can.

Although we shouldn’t have to, paying for an initial consultation with a gynae was the best thing I ever did to get answers.

Let us know how it goes 🙂

[MrsF2020 in reply to Moon_maiden]

Thank you for your reply!

I’m nervous about the scan now, I’m not sure why though.

How much did you have to pay for private, if you don’t mind me asking?

[Moon_maiden in reply to MrsF2020]

Don’t be too nervous, it’s natural though, especially when we want answers but don’t in the same breath unless it’s nice and simple 🙂

Endo is unlikely to show, but can depend on who’s doing the scan, but at least rule out anything else.

The initial consultation was £200, follow up ones, £120 and lap just under £3K. I sold things to pay for it.

[Italia20]

I am so sorry you are going through this. I to have been fobbed off but when I was your age it wasn’t spoken about. I was told it was normal and to get on with it. You are young so I would look at the endometriosis-uk.org website. They have so much information, treatment options and a helpline. I just felt better educating myself , which made me feel confident when speaking to my GP. It’s your body and I think you are right to question information you are not sure about.

You are not alone 😍

[Sadgirl495]

I’ve had a period since I was 8. I get pain in my abdomen so bad it makes me sick. I went to the doctors when I was 13 as I had black blood coming out of me but it was because i was a ‘new starter’ as they said. T Come August time this year and I ring the doctor, he mentions endometriosis. I didn’t understand it at first, I was fixed on the thought that I had hypothyroidism. I went for a blood test and that came back clear. I have been for 4 ultrasounds which they saw scar tissue and blocked blood, and 1 internal which they saw 5 cysts on my ovaries which she said was fine. I haven’t had my period for nearly 4 months which isn’t normal as I’m always late but never miss my period.I have been put on the depo injection and the pain is unreal. I can’t eat properly as it’s so bad and I’m stuck in bed most days. I get problems with my bowels too which gives me horrible stomach cramps even when just passing gas. I’ve got arthritis in my knees and it’s made that so much worse as it only used to worsen when I bent them, now I can hardly walk with feeling like I’m about to pass out. But the reason they’re pushing me away is probably because I’m only 17😕 I hope everything went well with your scan and reading your post has given me a bit of relief as ive kind of gone through the same things you did so I know I’m not alone🙂

[MrsF2020]

Thank you everyone for your replies! I had my scan today, which was a little traumatic, she would not give me any details on what was on the scan and just the report is going back to the doctor... it was not like my other scan where I was told about my cysts there and then... I feel so deflated.