My story : Well where to start in my late... - Endometriosis UK

Endometriosis UK

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My story

Johanna1618 profile image
7 Replies

Well where to start in my late teens: early twenties I was diagnosed with ibs after suffering many stomach issues, since then the pain did not subside and seemed to be taking over my social life and just became very isolated in myself. I kept being persistent until the doctors finally offered me a scan which revealed I had a chocolate cyst on my left ovary. Now at 26 I finally got told they would do an laparoscopy which I had yesterday. After the surgeon revealed the left cyst was due to rupture very soon so he removed this and did actually find some endometriosis which he managed to remove also. This disease can go unnoticed and make you feel like a hypochondriac which I've been called a lot in the past. All I can say is you know your body and trust your own instincts. Be persistent and push for anything

You can to get your diagnosis. Although I didn't want this outcome I can now start to understand that my pain wasn't in my head and that hopefully can be managed and monitored. Has anyone else recently had a lap done? Would love to hear about your recovery.

Stay positive ✌🏼❤️

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7 Replies
Crystalee profile image
Crystalee

Do they know how long the cyst was there for?

I currently have a chocolate cyst on my right ovary and is 3.6cm in size.. what size is yours?

I'm on the waiting list to get it removed

Johanna1618 profile image
Johanna1618 in reply to Crystalee

Hey so my chocolate cyst was found in June and it was about the same size, they had me in for a second scan but I wasn't happy with the service so I asked to see a specialist and he did another smear and look around he said he could feel the cyst and that it's best to do a lap to diagnose anything. I can't say yet as I'm still in recovery but I am glad the cyst has been removed, whenever I would cough or sit up I could just feel a sharp pain in my left side. I hope you get your op soon. Have you been diagnosed with endo?

steph_D profile image
steph_D

Hi,

I have been suffering with pelvic pains for 7 years. I was treated the same thinking it was all in my head. I was wrongly diagnosed 4 times. I was told i had IBS at first then was told i had PID (pelvic inflammatory disease) then polycystic ovaries. I have been in out of hospital the past 3 years having 3 -4 days stay everytime. They thought i had appendicitis as my worst problem side was my right.

As they could never determine the course i felt like the ward staff where looking at me like i was putting it on as they could not find anything wrong with me. Had multiple scans and nothing showed up.

I pushed and pushed and kept going to my GP over the 7 years and then finally was told i may have endometriosis. For years i have been struggling with pains having to have alot of time off work. Feeling very depressed.

I had my laparoscopy 13days ago. Finally was confirmed and treated for stage 2 endometriosis. I have 3 weeks off work to recover my first week was quite painful due to the gas...with pains in my shoulders i had to sleep sitting up for 5days. Ive not started driving yet but im alot more mobile and feel alot better. However im still very tired and taken it easy.

deedeeme profile image
deedeeme in reply to steph_D

Hi Steph!

Not to scare you. Just want you to be aware that IBS is often confused with neuroendocrine cancer symptoms. My 42 year old daughter has been thus diagnosed. Just want to get the word out there. Thanks! Hope you have a better recovery as time goes on...

steph_D profile image
steph_D in reply to deedeeme

I do not have IBS i have just had a confirmed diagnoses for endometriosis so its not cancer. So thanks.

Johanna1618 profile image
Johanna1618

Hey Steph thanks for sharing your story. It's so frustrating when you feel your not getting through to anyone I had to push and push to get my scans and just kept being persistent with it but it does make you feel like your constantly moaning. But the pain is so so real and really annoying that a lot of people just think it's "bad periods" if only they knew.

Glad you finally found out the cause, now you know did it take a lot of the stress away? My recovery hasn't been too bad, however it's only been two days. The gas pains in my shoulder was bad and definitely found it hard to sleep. But glad I have been prescribed meds as they seem to be doing the trick. Maybe a TMI question but can you get constipated after surgery I haven't been yet which is unlike me. I eating fibre and hopefully this will help it. Keep me updated with how your pain levels are :)

steph_D profile image
steph_D in reply to Johanna1618

I feel like finally i know now. So thats a positive! Just dont know where i go from here.

I didnt go to the toilet until a week after the lap. I was very constipated hurt quiet alot. I was then constipated for a few days after. Its still a struggle now but nowhere near what it was. So it does get better.

I am now 2 weeks post op and I drove for the first time yesterday and it was ok. I have done alot the past 2 days been quiet busy but i feel very tired now and abit of pain once I've sat down.

1st day back at doing the school run tomorrow....x

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