Endo diagnosis without heavy periods? - Endometriosis UK

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Endo diagnosis without heavy periods?

Goldencat profile image

Hi guys,

Has anyone had a diagnosis of endo without having heavy monthly bleeds? My lap is next week and after hearing that so many of you suffer with very heavy periods, I’m starting to get very anxious that they won’t find anything. I suffer with extreme pain after sex and intermittent pelvic pain during the month which can be severe but usually low level burning each day. Never had STIs and have had blood tests for PID and drs say it’s unlikely. I’m just getting more worried they won’t find anything because the pain after sex makes me think it really can’t be something gastro related. Guess I’m worried where to go next if they don’t find anything at the lap 😔 I don’t want endo but I’m desperate for a diagnosis as it’s having a severe impact on my work and taking time off.

15 Replies

You definitely dont need to have heavy periods.. the problem with endo is that it causes bleeding OUTSIDE the womb so you never get to see the blood. It's that blood which doesnt get released which does all the damage.

A lot of women do have heavy periods as well. But its entirely possible to have endo with light flow x

Goldencat profile image
Goldencat in reply to Lottie80

Thanks for your reply :) Guess all I can do is wait and find out! x

Hi Goldencat, I’ve never had heavy periods yet I was diagnosed with stage 3 endo following a lap. It’s not a symptom we all have. Good luck with your lap and I hope you get some answers x

Goldencat profile image
Goldencat in reply to Georgina78

Thanks for your reply Georgina78. Less than a week to go now so just got to push on through. xxx

Georgina78 profile image
Georgina78 in reply to Goldencat

Hope it all goes well, it’s really not too bad but go at your own pace in recovery and don’t rush back to work etc xx

Yes! I have a very light flow with fairly low level period pain. It's the rest of the month that's horrendous for me! I have debilitating fatigue and back /hip pain. I do get abdominal pain & bloating but it's bearable compared to my other symptoms.

I actually had a clear lap 2 years ago after gastro found nothing, I was later referred to gynae who were adamant I didn't have endo. They very reluctantly have me the lap and I felt like a fool when it was clear. My back pain got really bad and I was referred to orthopaedics last April. I had an mri & got the results about 7 weeks ago and I have severe endo throughout my pelvis.

I know it's a worry before the lap. You just want know what's causing your problems so that you can a way of getting better. My advice is to just face the journey a one part at a time kind of style. It's just to much to think about all the what ifs. Just trust that whatever happens, you'll be OK. You'll be able to deal with it. Once you've got the outcome, get back on here and you'll get help dealing with the next part, even if no endo is found, it's not the end.

Whatever happens, you'll not be alone and you won't be the first person to have to experience it so you'll get advice and help and what to do. Xx

Goldencat profile image
Goldencat in reply to weekari

Thanks so much for taking the time to reply. I'm glad to hear you've finally got a diagnosis - sounds like it's been a real struggle for you to get to where you are - sorry to hear it :( Thank you for your advice. All I can do is wait to see what happens and go from there. Will let you guys know how it goes. xxx

Meeeemeeeeeeeee!!! My periods where and still are very light they last 3 days max :) and yes I have endo xxx

Goldencat profile image
Goldencat in reply to Fooofs91

What symptoms did you have when you were referred Fooofs91? Was it diagnosed with following a lap? It's crazy how varied people's symptoms seem to be!

Mswa profile image
Mswa in reply to Goldencat

Mine wasn’t diagnosed till the lap as behind the uterus.

I’ve been fobbed off for years with varying issues I now know are all interlinked - vulvodynia and loads Utis, lots pain. Also had fibroid and borderline PCOS, was diagnosed following acute onset pain where I could barely walk my pain was so severe, this lasted a few days, was referred for a non urgent ultrasound they suspected ruptured cyst and pelvic Infection. Was in agony for weeks, when I went back to the gp she said I don’t think it’s infection it may be endometriosis (but prob did have ruptured cyst) I was so relieved it was her suggesting and not me suggesting and getting fobbed off.

I went private in the end for the lap and they found the endo, some people can have not much and loads pain and others have more but don’t suffer and are undiagnosed. Is a funny thing.

I’m always tired and get ill easily, my symptoms worsened within a two year period of having no coil and trying to conceive. I’ve given up on that now and had the mirena back as think it was beginning to come back. I would def go for the lap although recovery was slow, for me that was more anaesthetic related than the physical recovery.

Hope you get sorted x

Mswa profile image
Mswa in reply to Mswa

Just re read and sounds really depressing, the lap was a good thing 🙂🙂

Sounds just like me, worse pain is when I’m not on my period oddly for the whole rest of the time.

I had excision from uterosacral ligament and other areas

My periods were totally temperamental - one month insanely heavy and the next barely anything at all. I’ve spoken to a lot of women and all of us have completely different experiences so no, you don’t need to have heavy periods to have endo.

The symptoms you’ve described sound a lot like mine and I was diagnosed with endo after my first lap. The important thing to remember is you are the only person who really knows your body. Even if you don’t get the diagnosis you’re looking for this time don’t give up. You know yourself.

Good luck for your op, I hope it goes well! It really isn’t as bad as you’d think (I had a meltdown the night before and ended up laughing about it all as soon as I was in recovery!) and if you get what you’re looking for it’s all worth it! xxx

I had stage 4 endo found during a lap. Didn't have heavy periods or the usual pain symptoms. Only found out when I saw fertility specialist while ttc.

Goldencat profile image
Goldencat in reply to mayk

Wow... it’s just crazy how varied the symptoms are. Thanks for your response - even if they don’t find endo at least I know the symptoms aren’t all in my head. I can’t believe you had no symptoms at all! Xx

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