Anyone with similar symptoms to help with lap decision?

[AllieLW]

I came off the pill after 14 years and have had a few months of heavy periods, crippling stomach and lower back pain in first 24-48 hours of my period, with IBS like symptoms in the same time period. When I was in my early teens up until going on the pill, I had the same including nausea and feeling very dizzy and had to have prescribed painkillers, and my mum says that back then the doctor suspected endo but nobody ever tested it. On the pill the pain was very manageable, but periods still heavy and I still had frequent loose stools.

I’ve had an ultrasound recently which was clear bar one polycystic ovary, and this was the same as an ultrasound I had in 2015 after a week of pain in my stomach which took me into A&E (which then flared down).

My Gynae has suggested I have a lap to help with a diagnosis, and I’m going to do it I think but curious if anyone else has been in a similar situation to help me feel confident that the lap is worth it? Reading some of the experiences here makes me feel very lucky in comparison.

I don’t have pain during sex nor any bowel pain when going to the toilet, and these seem to come up quite a lot when people are talking about symptoms. But the pain the first day of my period is severe, with nausea and IBS style toilet situation, which only gets better with a lot of paracetamol and inbruprofen and endless hot water bottles. I couldn’t work for example during the particularly bad day. Has anyone been diagnosed without those 2 symptoms?

My periods are not long off the pill - 5 days max. So far fairly regular (which is good given the polycystic ovary!), but I’ve only had 3 or 4 since coming off the pill.

I also recently found out my mum had similar, crippling period pain a lot of her life which totally went after she had me. If it’s not endo it must just be really bad hereditary period pain, although I’ve always felt that without a name for it, it’s not taken as seriously as it feels.

Thanks in advance!

[Kieraface]

Hi Allie,

Just because you don’t have all the same symptoms doesn’t mean it’s not endo. Some women have endo and have no symptoms or pain at all, others only get pain while bleeding and others sadly have it constantly but I think your symptoms on your period warrant the lap. It may not be endo, it could be something else like adenomyosis but it’s worth investigating as then something can be done about it. Wish you the best of luck! x

[AllieLW in reply to Kieraface]

Thank you x

[HazelGecko626]

Hi Allie,

I was similar in that I was on the pill for around 16 years because I was around 33 and wanted to start a family. I’d always had bad periods. I actually got a kidney stone, then I thought I had another and went for an ultrasound and they found cysts on both ovaries (chocolate cysts). They were pretty convinced it was a symptom of endometriosis and was referred to Gynae.

From there, I had to wait 7 months for a laparoscopy and that was short in comparison to others. My symptoms were IBS like symptoms with a particular sensitive bowel, really bad pelvic pain, heavy periods, backache, I constantly towards the end of my 7-month wait needed hot water bottle and baths all the time.

The only way to get a diagnosis is a laparoscopy and it is a noninvasive surgery with quick recovery usually. My laparoscopy recovery may have been different because they didn’t remove anything as it would have hindered my fertility chances. They found extensive endometriosis on my pelvis, my tubes were destroyed and part of my endo is merged into my bowel.

I subsequently went on a journey with IVF but my body couldn’t take IVF and I had a horrific experience which ended up with a trip to A&E and blood transfusions.

4 years later, we have now adopted a beautiful little girl and I’ve been on prostrap/HRT for 2 years. I’m now having to pay private to get things going again as I can’t stay on prostrap and they never got rid of any of the damage. Plus I am getting all my symptoms back

I would say for piece of mind and your symptoms having a laparoscopy will give you some answers. Hope you find some answers to your pain and get the help you need x

[AllieLW in reply to HazelGecko626]

thanks Hazel, good advice.

Sorry to hear you’ve had such a rough time with it but glad you got a happy ending with regards to your little girl!

[Tiredgal72]

Hi Allie,

Your story sounds really similar to mine! I was on the pill from 17-27, originally going on it for heavy and draining periods. For those years I only really suffered with heavy periods, loose bowels and couple of other symptoms just before and during my periods.

It's only since I came off the pill 3 years ago that my symptoms have accelerated and my symptoms are all the time, I now have deep invasive endo, a large endometrioma and it's grown into my bowel. I hadn't even considered endo as a possibility as I barely fit the symptoms at all!

If I were you I would definitely go for the lap as if it is endo, you may be able to find it before it reaches a more advanced stage. I wish mine had been found earlier! Best of luck with everything x

[AllieLW in reply to Tiredgal72]

Thank you for this. I’m sorry to hear your symptoms. Did your gynae recommend you going back on the pill to manage symptoms? Thanks

[Tiredgal72 in reply to AllieLW]

Yes, I'm back on the combined pill now (the only one that works for me) and take it back to back so I rarely have a bleed. It's definitely helped manage my symptoms more so than when I wasn't taking it (as my periods were getting pretty bad) although I still get various symptoms daily. I'm also hoping it's stopping the endo from progressing while I'm waiting for surgery to remove it. Have you been recommended to go back on it?