Endometriosis UK

The pain is back but its different?

My pain has changed from deep, sharp pelvic pain on my right side to a dull, ache across my entire lower abdomen - a cramping pain I associate as period pain. Any ideas what it could mean?

My background: I've always had heavy and painful periods that could leave me unable to get out of bed . Then I had a few instances of severe pelvic pain in my left hand side. Following trips to A&E, scans etc. and four years later I was in constant pain that took over my life, impacting my work and my relationship. Its all I thought about every moment of every day.

I had a lap and they confirmed and removed the endo, and after a couple of weeks the pain did get better. It even went away completely for a few months. Then it started to come back - the same pelvic pain, but only intermittently so I could cope with medication etc.

But for the last month I've had near constant pain across my entire stomach, a cramping pain that I would normally expect to get during my period. The pelvic pain in there in the background too, but its this new (well new for it to happen without my period and for such a long time) that is worrying me. Any ideas why?

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Have they mentioned a chance of Adenomyosis?

I am the same as you, a completely new pain has taken over now similar to what you describe and I got a diagnosis of Adenomyosis, pelvic inflammatory disease and PCO.

I do believe the Adenomyosis is the cause of my pain.

I think you can see adeno on a scan, mine was seen in a laparoscopy I was having for endo.

Hope this helps xx

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Hello, may I ask what adenomyosis is? This is all new to me as I've just been told about endometriosis 3 weeks ago!!

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So sorry for the late reply!

Adenomyosis is when the cells that usually grow outside of the wall of the utuerus, grow inside the muscle wall of the utuerus, and unfortunately, only a hysterectomy will cure Adenomyosis.

Medication could help with pain, but I've never tried it to be honest!

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Hi,

I'm so sorry to hear you're still in pain.

Have you been referred back to hospital for further checks? You might benefit from a vaginal ultrasound. It could be a cyst, an infection, new lesions, endo that wasn't identified... They need to investigate further. No one should have to live in pain.

I had three types of pain simultaneously caused by cysts, e-coli and endometriosis.

I know it's hard to live with this kind of pain - especially when you know something's wrong and it hasn't been diagnosed - but please be persistent with your healthcare specialists. Many of us have been fobbed off and had our valid concerns dismissed.

Have you tried the endometriosis diet? I found it hugely beneficial following surgery. x

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thank you - I am waiting for an appointment still and going to push for a referral then. I've had a couple of vaginal ultrasounds before and they found lots of cysts on both ovaries but nothing they were worried about at the time.

It all took such a long time last time to get anywhere, I don't want to go through all of that again. Then I had the lap and afterwards I had to insist I even saw someone to tell me if they had found anything or not, then he just told me just to go on the pill as that would cure it (!) and then I was straight back out of the system - no follow up at all... so i guess now I just have to go straight back to square one!

I think it might be time to look into the endo diet more, I've seen its really helped a lot of people. thank you x

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Hi sorry to hear you are in pain, it's so unfortunate to be in pain without any answers! My gyne told me too just to go on the pill and it will cure it, more like a quick fix! I'm meant to start it on my next period but Am yet to get my period, hopefully it comes soon!!

Hope you get answers you are looking for xx

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May I ask, are lesions different to cysts? Mind sound like a silly question but this is all new to me, I didn't know about endometriosis until 3 weeks ago!

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Lesions are endometriosis.

The following website is a helpful resource for understanding the illness better:

endo-resolved.com

We're all here for you, too, so please reach out if you need support. x

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Yes, whereas an ovarian cyst is a fluid filled sac that can be caused by endo or something else. As far as I understand I think doctors say they are ok unless they burst or get too big.

let us all know if you have more questions x

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Thank you, I've had a chocolate cyst burst with 100mls of free blood. They only cleaned around it. I now have another cyst that is 36mm in size on my right ovary but yet to be diagnosed

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