I have no idea: I have joined this forum as... - Endometriosis UK

Endometriosis UK

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I have no idea

Pinkybow profile image
10 Replies

I have joined this forum as I have been to my gp (been to/ was forced) I have the following symptoms-

Heavy bleeding, cramps before my period, during my period and the worst pain after my period. About 3 times a year I have crippling pain where I get cold sweats and literally candy move a muscle. I am tiered most of the time, I get sore down below after sex and after my period when I wee. I have soft stools a lot and it hurts if I hold it in. When I'm on my period the pain of anything in my bowls is unbearable.

I went to the gp and she said it sounds like polycystic ovary syndrome and sent me for a scan. The lady doing the scan said there is a large cyst on one ovary, pollops and my womb lining is unusually thick. The gp rang to ask me to come in this week to discuss my results.

I spoke to my sister in law who suffers with endometriosis and she says I have all the symptoms. I feel a but of a hypochondriac though and that maybe some of it is just normal. I've been like this for as long as I can remember and have conceived my little girl first time, so I just don't know 😔

Sorry for the long post I'm just a bit confused as to what is wrong with me.

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Pinkybow profile image
Pinkybow
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10 Replies
HeatherJM profile image
HeatherJM

Hello! :) Don't ever worry about feeling like a hypochondriac - particularly when you're clearly really suffering. I'm so sorry you're in loads of pain! None of it what you're going through is 'normal' period pain.

Your symptoms are very similar to mine and I have stage 4 endo. I also have a cyst on my ovary but it's an endo cyst (you might want to look up different types of cysts). It's possible to suffer from more than one pelvic problem so even if you did have PCOS you could still have endo. Go to an endo specialist not a normal gynaecologist and tell them these symptoms. Maybe make a list of keep a diary before you go.

You can conceive and have kids with endo. You can also have symptoms long term :) There's no reason for you not to take care of yourself and your health and find out whether this is what's causing your pain.

Don't worry about the long post - you can message me any time xx

Pinkybow profile image
Pinkybow in reply to HeatherJM

Thanks for your reply. I just feel I'm going stir crazy! X

Heloo85 profile image
Heloo85

Im not down playing your problem, you clearly have one and a major one at that, but i feel you shouldnt be yet self-diagnosing yourself until further test. All pelvic problems cause the same or very similar symptoms. And all pelvic problems can be as devastating as any other! Whatever is causing your issues clearly needs full investigation and treatment and id push for that instead of going "oh ok i have endo, ill try the coil".

Pinkybow profile image
Pinkybow in reply to Heloo85

I'm not self diagnosing myself anything? This post is a little confusing, my gp said maybe pcos, my sister in law said maybe endo, I am currently under investigation to find out what is wrong, I have not said I have endometriosis, infact the opposite I said I am unsure and looking for a little bit if advise as I can't get my head around all the different symptoms for different problems and wanted to see if anybody is in the same boat and the outcome. I've never said I'm getting the coil either so I don't know where that has come from. Sorry if I've got the wrong end of the stick with your post but I don't quite understand why you have said I'm self diagnosing and getting the coil?

Heloo85 profile image
Heloo85 in reply to Pinkybow

Some people will have endometrial hyperplasia with endo and some women wont. Some women will have it with pcos while others are just perimenopausal. Some women will have gone through the menopause. Some will have it through smoking, some through genetics. Its hard to say. Treatment is usually either progesterone or d & c or hysterectomy depending on type or thickness! Thats why i said instead of thinking what if, or taking your gps or peoples guesses, you should push for further testing. Ie. Get a referral to a gynea. That will sort you faster than just having a guess cuz at this stage it would be a guess!

mihaelad profile image
mihaelad

Hello Pinkybow, I have similar symptoms and findings. I had laparoscopy, but no endometriosis was found. However, on MRI and ultrasound, it appears I have a 5 cm ovarian cyst, polyps, thickened lining and bulky uterus. My OBGYN doctor believes I have adenomyosis... Can you describe how is your pain after period? This is the part that is bothering me the most. A couple of days after my period ends, I start having very severe low pelvic pain that feels like burning. It normally lasts about 4 - 5 days, but it's absolutely horrible. Feeling tired, nausea, weak and just sick from the pain. Do you have the same? And did you have these issues when you had your baby girl or the problems started after..? I am trying to have a child, but even though I was able to get pregnant several times, I ended up losing the pregnancies.

Thank you for your time. Please let me know.

Pinkybow profile image
Pinkybow in reply to mihaelad

That's really interesting and I've not heard of that before. My normal after period pain feels like a really bad stitch down there, the other pain I occasionally get is like somebody has literally taken a knife and stabbed me. I also the only way i can describe it is my vagina aches, like when your legs are tiered and they start hurting. I am really weak but don't get sick with it. I had the problems before I had my little girl but they intensified after I had her 3 years ago. I'm really sorry about your babies and hope this year is your year xx

CharleneG profile image
CharleneG

Hi All. I have just been diagnosed with an endometeioma mass on my C-section scar. The trouble is that I had my c sections 22 and 15 years ago. The have put me into forced menopause with injections until they get to the surgery? Has anyone been forced into menopause and had a mass growing foe this long? I am in Canada and cannot find any discussion boards for this issue in my country. Thanks.

Pinkybow profile image
Pinkybow in reply to CharleneG

I think you need to start a post , as nobody in the same boat will probably read this on my post. Xx

Pinkybow profile image
Pinkybow

So I went to the gp and she referredme to an emergency gyn appointment. Within a week i was seen, he did an internal and has referred me for another scan and a biopsy (which I'm terrified of) apparently I'm showing signs of ovarian cancer. The cyst is just over 8cm. He said about inserting the coil when I go under for the biopsy. He said we will go from there as to what it is and what they are going to do with me. I've had all the cancer bloods done so just waiting for results of that.

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