Follow up post about Possible Endo? - Endometriosis UK

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Follow up post about Possible Endo?

Chloelouise92 profile image
21 Replies

I posted a few days ago about my symptoms and if it sounded like it could be Endo. After looking online on here several people have mentioned about having heavy periods. Can I ask is there anybody else in my situation. I have been on the pill for 10 years and I don’t have what I would say is particularly heavy periods, does that mean it probably isn’t Endometriosis or have people been diagnosed that haven’t had heavy periods? Like I say I’ve been on the pill for a long time so I didn’t know if this would have an effect. Thanks

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Chloelouise92
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21 Replies
introuble profile image
introuble

HI,

Sorry, I don’t have answers but i need to know too...

Please keep on updating :)

elisepalmer71 profile image
elisepalmer71

Hi Chloe. My periods were never that heavy but were always agony. So you don’t necessarily have to have heavy periods to have diagnosis of endometriosis. Elise x

Chloelouise92 profile image
Chloelouise92 in reply to elisepalmer71

Oh that’s helpful yeah I’ve never had heavy periods but since I started these symptoms I’ve had extremely painful periods but have never suffered in any way with periods beforehand! X

Princesspeach84 profile image
Princesspeach84

No when I was first diagnosed with endo I googled it and first thing symptom I saw was 'heavy periods' I thought weird!! I have never had heavy period, I was always light and short but I did pass brown blood :( and always had pain when starting period and when ovulating xx I hope you get sorted xx

Chloelouise92 profile image
Chloelouise92 in reply to Princesspeach84

It’s good to hear as it was the only symptom I thought doesn’t sound applicable to me! I don’t really have heavy periods and have never suffered with pain up until the previous 2 I have had when I am really hurting and struggling to walk! X

Princesspeach84 profile image
Princesspeach84 in reply to Chloelouise92

I would get yourself to Drs as it's not normal to have period pain where you can't walk (although I and many other ladies have/had this) ask your Dr to refer you to endometriosis specialist. Hope you get sorted xx

Chloelouise92 profile image
Chloelouise92 in reply to Princesspeach84

I’ve not had this before so it’s not the normal for me, I’ve never been affected by periods, I don’t even know If I’ve come on sometimes as I’ve never had bad pains before etc but the last 2 periods I’ve had are very painful. I struggle to walk and I’m bloated, also very lethargic. I’ve been tired for a long long time but never thought much of it x

Belljar profile image
Belljar

The pill lightens periods so if you’re still on it, that could be why. If not, I’ve just been diagnosed and it was a shock as so far, I have no pain. I hope you get sorted soon x

Chloelouise92 profile image
Chloelouise92 in reply to Belljar

Oh wow really, I hope this isn’t too rude to ask but how did they find out? X

Belljar profile image
Belljar in reply to Chloelouise92

Not at all! I was diagnosed with an ovarian cyst out of the blue after some sudden pain. The scan showed it could be an endometrioma but they weren’t sure. I wasn’t convinced but the laparoscopy to remove it confirmed it was and I had one tube that was grade 3 endo so they had to remove that too. I’m still learning about it and have my follow-up on Wed so will find out more. I really recommend Lara Briden’s ‘The Period Repair Manual’ Book: it’s helped me to understand my own body & is full of advice for different issues x

Chloelouise92 profile image
Chloelouise92 in reply to Belljar

Okay that makes sense, I have had an ultrasound external and internal and it showed nothing but a lot of people have said Endo wouldn’t be picked up on this! X

Belljar profile image
Belljar in reply to Chloelouise92

Yes, I had two scans prior to the op but Endo was only mentioned because the cyst looked like an endometrioma to one of the radiographers. I didn’t believe it until after the op because I’d had no symptoms of it!

Chloelouise92 profile image
Chloelouise92 in reply to Belljar

How strange! Bodies are a very weird aren’t they, it could be that I have majority of the symptoms and don’t even have it! X

Peebles2sarah profile image
Peebles2sarah

I have endo and had very light periods (some months no periods). I was on birth control for 7 years, now on visanne and have had no period at all for around a year.

Chloelouise92 profile image
Chloelouise92 in reply to Peebles2sarah

I’ve never had heavy periods really as far as I can remember. Did you have symptoms and how did they discover you had Endo? I’m not sure I even have it but I have a lot of the symptoms so it would make sense x

Peebles2sarah profile image
Peebles2sarah in reply to Chloelouise92

My main symptoms were just the pain! I had really bad cramping pain around the lower abdomen and sharp pains on my right side near my ovary area. Since I didn’t have a fever and had a clean Pap smear, they thought maybe chrones but my scope was clear also. Next they did a diagnostic laparoscopy and found the endo (finally!!)

Chloelouise92 profile image
Chloelouise92 in reply to Peebles2sarah

Yeah my pain thing is pain and it’s just been constant for 8 weeks now but I’ve had 2 periods in that time and it defo worsens around that time of the month! X

steveymoom profile image
steveymoom in reply to Peebles2sarah

Hi Peebles2sarah, can I just ask how long it took for you to get the diagnosis? I have had bad cramping pain in my lower abdomen for 3 weeks now and the doctors still don't seem to be that bothered!

Peebles2sarah profile image
Peebles2sarah in reply to steveymoom

Well I was misdiagnosed at 14 with PCOs so technically 7 years but about a year from the time that I was certain it was more than PCOs!

Char411 profile image
Char411

Off the pill my periods were very heavy but after being on the pill for numerous years my periods became very light and I was diagnosed with endometriosis after a lap. I am still on the pill and still have light periods although they are prolonged and can last from 7 to 11 days. Endo doesn’t have a set rule book and although has certain symptoms, can vary greatly from woman to woman x

Chloelouise92 profile image
Chloelouise92 in reply to Char411

I suppose being on the pill for a long time regulates your periods doesn’t it. I have my first gynaecology appointment in just over a week so hopefully they will have more of an idea what it could be x

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