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Women's health

Does this sound like endometriosis?

9 replies

walkingout101 · 23/09/2020 20:37

For about 8-9 months my cycle has been very chaotic. I've had bleeding mid-cycle, bleeding on ovulation, very light periods, very heavy periods, periods with no pain, excruciatingly painful periods. I've experienced pregnancy type symptoms almost every month and kept convincing myself - but all BFN. I have sore boobs from ovulation to AF every month. Some cycles have been 26 days, others 37 days.

I have constant abdominal bloating and pain and can't wear any of my trousers done up. The pain on ovulation is the worst but I also suffer horrendous pain when I need to poo, the best way I can describe it is as if there isn't enough room in my abdomen.

I've been checked for UTI's, been scanned for cysts and the like, blood tests all clear. Can't think what else it can be, but I've had enough.

(nb: my periods aren't usually painful, just sometimes they'll be randomly horrific)

Please any ideas, advice?

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Pelleas · 23/09/2020 20:44

Yes, in my experience, many of your symptoms are classic endo. Erratic bleeding, mid-cycle pain, bloating. I had bowel issues with my endo which turned out to be due to bowel adhesions.

Unfortunately you usually have to be really persistent to get a diagnosis as they'll fob you off with 'normal' period pain, PCOS, IBS ...

This is a really good website/forum for endo - lots of advice about treatment pathways etc.

healthunlocked.com/endometriosis-uk

Persist, persist, persist - it took me 10 years to get diagnosed.

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walkingout101 · 23/09/2020 20:51

Thanks @Pelleas I already think my GP sees me as a pest as I won't let it go. Worth mentioning that I had a CT scan in Feb, would it have shown on there do you know?

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Pelleas · 23/09/2020 21:00

It would probably depend where it was and whether they were looking for it. It's not always obvious if it hasn't spread far from the womb. Mine was evident on a trans-vaginal ultrasound.

Sometimes you need to be a 'pest' I'm afraid. It's disgraceful the way women have to fight for gynaecological diagnoses. I expect it's even worse now with Covid (DH has an ongoing investigation into a heart problem and it's like wading through treacle trying to make progress with the NHS),

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HattonsMustard · 23/09/2020 21:09

@walkingout101 A laparoscopy is the only definitive way to diagnose endo sadly. They are very reluctant to do them because of the risk of adhesions afterwards and the cost. But luckily a lot of gynaes will treat you as if you have endo and see if any of the things they do alleviate symptoms.

Bloating, I look like I am 6 months pregnant Grin I, like you, cannot zip up my jeans. I wear dresses or elasticated waist trousers with tunic tops to hide the "bump". I used to think I was going to pass out from having a period poo. I do still bite down on a towel and breathe through the pain, it is as painful as labour pains. My cycle used to be anything from 25 days to 40. Luckily I could tell when I ovulated so knew when I would be coming on my period.

All this is me saying, it could well be endo. I have always relied on www.endometriosis-uk.org for information. I was diagnosed 19 years ago when I was 26. I had suffered from horrific period pain since I was 15. Fobbed off by many male GPs over the years before then.

You don't say how old you are or whether you have had children yet. These are also factors in treating you.

But yes push your GP, this is no way to live.

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walkingout101 · 23/09/2020 22:38

Thanks so much for the advice! I really appreciate it and will take a good look at the site recommended.

I'm 33 and I have a 2 year old. Never had any issues until about 7 months ago, it's all gone haywire.

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Cherrylipbalm · 24/09/2020 17:35

I do not want to worry you but have they ruled out cervical cancer or ovarian cancer? I am sure it isn't however endo mimics many other illnesses. They thought I had bowel cancer :( I have endo in my bowel.

Also second @HattonsMustard - the endo uk charity is brilliant
Good luck xx

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HattonsMustard · 24/09/2020 17:54

@walkingout101 I assume the CT scan you had ruled out all the cancer possibilities.

Were you on the pill before having your child? I was put on the combined pill at 16 to help control my periods and the pain, if you do have endo it regulates oestrogen which can help with the symptoms.

If your GP sees you as a pest, please see a different GP within your practice. Clearly you are in pain and it needs to be investigated and treated. Also very worrying that they didn't mention endo at all. It has been highlighted a lot recently, even on the BBC news homepage about how women with endo feel.

Like I said I was diagnosed 19 years ago. I really hoped things had got better with GPs being informed. If you are looking at the endo website several of us on here have been through a lot of the drugs and surgery. I drew the line at taking testosterone (Danazol) but had done everything else, I overhauled my diet, had acupuncture, drank Chinese teas, you name it I did it. If you had told me to rub a frog on my abdomen to stop the pain I would have gone frog hunting Grin

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walkingout101 · 24/09/2020 18:17

Tbh nothing has been ruled out. I've had two ultrasounds to check for cysts, both times finding "all normal" the CT scan was after I was hospitalised for what they thought was appendicitis (I was in very severe pain on one side) that turned out to be a probable cyst that had then gone by the time I was scanned. Nothing else was found.

I'm a little worried now. I have an appointment on 1st October with my GP so I will push for further investigation.

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AttilaTheMeerkat · 25/09/2020 09:15

Endometriosis cannot be ruled out here as a cause of your symptoms.

I have had more internal ultrasound scans than I care to mention. Precisely none of them found the extensive endometriosis throughout my uterine cavity!. Those deposits are that small. But it was there and it was only found through laparoscopic type surgery.

You will need to be persistent in order to get answers.

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