Is it endo? : I have struggled with severe... - Endometriosis UK

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Is it endo?

hrhoney
hrhoney

I have struggled with severe period pains and a heavy period since I started when I was 13. I also get really bad back ache and bloatedness, sometimes I am in so much pain I can’t sleep or move. ( I am nearly 17) I am on contraceptive and took a break from my pill this week.

I have been to the doctors before and they’ve pushed it off and prescribed me naproxen you cope with the pain.

I sometimes get really bad pains during sex and bleed, the pain is unbearable. This is upsetting to me and embarrassing, the doctors made me do an sti test and it all came back negative.As I thought it would.

I also suffer from very bad bowels when I am on my period and makes me So bloated.

This week I came on my period, it has been very heavy and painful. This morning I was having very painful spasms and then when I went to the toilet a large white mass was stuck to the tampon I had in. I spread it out on a tissue it was flesh like and ripped if you stretched it, I have never had anything like this before but it was very alarming. ( will attach photo as not sure what it even is) I do not think it is a miscarriage.

When I was 14 the doctor suggested the possibility of PCOS and it was brushed off and never mentioned again. I am confused and upset with my body and the doctors.

Is it worth going to the doctors and pushing it through as endometriosis?

13 Replies
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Near the end of a period I used to get clots, I never took much notice and thought it normal. The gynaecologist did ask me at the consultation if it happened.

Go back to GP, you have the photo and see what they say, don’t be embarrassed, they’ll have seen worse and you need to find out. Ask for a referral, maybe take someone with you, it’s harder for them to fob you off.

I don’t have photo to hand but fairly sure the endo was a blue type colour, I don’t know that it would come out on a clot.

There’s good advice on endo uk website about seeing the GP and what to ask

hrhoney
hrhoney in reply to Moon_maiden

Thank you, I went today and had a smear and a sort of examination. The doctor wasn’t even sure what the photo was she had no explanation:(

I’ve been scheduled for another appointment to go back next week for another examination when I’m off my period.

Moon_maiden
Moon_maiden in reply to hrhoney

Maybe the GP will have asked one of the others by next week. Have they put in a referral? An ultrasound will show some things but not normally endo, but useful to do.

Do you find smear test ok when It was done?

hrhoney
hrhoney in reply to Moon_maiden

She hasn’t put in a referral but I’m hoping she does, I’m going to prepare notes with everything that has gone on with me. I’m going to request one, even my mum has suggested it.

It was fine just very cold in the room but glad I’ve had it over and done with.

Sorry to hear about your health issues. With regards to the photo, it may be a decidual cast (the lining of the endometrium) you can also read up on 'membranous dysmenorrhea' - pain with passing the endometrial lining. I haven't had it myself so i don't know much about it sorry, but I've heard of it from someone else that got it several times when taking the pill continuously and that it caused severe pain with contractions. Hope this information could be of some use to you.

hrhoney
hrhoney in reply to c142

Thank you! My doctor today wasn’t to sure herself and didn’t really give me an explanation for what it was. I will read up on them now :)

c142
c142 in reply to hrhoney

The GP didn't know what it was with the lady in my family i previously mentioned as well ... the tissue was sent to the hospital for examination and there they told her it was a decidual cast and that it's nothing to be worried about. It was related to her taking the pill continuously to try to control her endometriosis (so the shedding of the endometrium in one go was related to her progesterone levels not the endometriosis itself). I think because it's quite rare, some doctors won't have seen it before.

Hi,

sorry your going through all of this, I'm not 100% sure on the diagnosis but when your on your period the uterus sheds and tissue leaves the body during your period but this looks alot more than usual, with what your saying next time you book an appointment with the gp you should mention going for a ultrascan to rule out endometriosis, my gp didnt even know what endometriosis was!!

I know it sounds rude but you have to tell them your not leaving with just painkillers you want to rule out the problem that your having and by doing so sending you off to a specialist.

Naproxen is a strong painkiller to give to someone so young and to not send them off for further tests.

I hope you feel better soon.

hrhoney
hrhoney in reply to MellMelly

I will request an ultrasound when I have an appointment next week for definite.

My mums friend who suffers with endo even said that naproxen is strong and can sometimes leave you with stomach ulcers. As I did start having problems with throwing up a lot when I take them but that settled.

Thank you :)

MellMelly
MellMelly in reply to hrhoney

Yeah defintely request one.

I would really suggest stopping the naproxen or only take it when the pain is really bad because they are too strong and it will be really bad for your stomach. When I'm in alot of pain, a hot water bottle helps, it dosent take it away completely but the heat helps especially when it goes through to your back.

I hope your getting things sorted and are feeling better x

Hello, 2 months ago I discharged a similar mass to yours.I had been on the pill continuosly for 3 months,then had a break with a strong and painful “period”.On the 2nd day,after a few hours of super strong spams and cramps I passed a mass like yours.I showed a photo to the gynae and she said it is a decidual cast.It is something rare (so that is why your gp did not know) but it is not dangerous at all.It is extremely painful as your uterus experiences contractions to expulse it (as you and I know!). It basically means that the lining of the uterus (the endometrium) sheds in one go instead of little by little bleeding as a period. Apparently there is higher risk of this happening if you are on the pill without break for long time but that does not necessarily mean it will happen every time you take a break (I dont know as I have not taken a break since last time when this happened).

I showed the photo to 2 endo gynae plus 2 other gynae in my family and friends circle and all said the same thing. I have endo but the decidual cast is not related to endo.

Let me know what your gynae says xx

This sounds very similar to my experience! I had been on the pill for two months and this was my break so hopefully it was one of these, I am still going to push for an ultrasound because I feel like there is something wrong possibly endo.

Thank you xx

Definitely push for the ultrasound! I was diagnosed with endo just 6 months ago and I wish I had pushed earlier for ultrasound so I would have found earlier.Nevertheless,I hope you don’t have it

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