Hello! Frustrated newbie here. Feel like i'm going crazy!

[Jennyjenjen01]

Hello all!

I have been under the Endometriosis team for around 5 years now after getting mid cycle rectal pain which has progressed. MRI showed some indeterminate ?endo lesions behind the cervix and scarring on the ovary. I have had the Mirena coil which seemed to help for a short while, but the pain came back with a vengeance.

I kept being told i was too overweight for Lap surgery so out of desperation, I took myself to Latvia for a gastric bypass last year. After losing weight, i had a laparoscopy in December which was negative (besides cervical erosion and some free fluid, from a ruptured ovarian cyst). Just before this i noticed that my legs would start to hurt when i was due to have my period. This has now progressed to severe cramps throughout the legs (i ended up falling on the floor last month because of it. it was so embarrassing!) when i am on my period.

The GP was pretty useless, performed blood tests and told me to chase my gynae follow up, which is in May. My vitamin levels are normal.

I have sorted a colonoscopy (through work), which i will be having next week as my bowels are very irregular and i have back pain constantly.

I'm just starting to feel like I'm going crazy and no one is actually taking this seriously. I'm not keen on oral hormonal therapies (these have a bad affect on my mental health); i just want to have it all taken out so i can stop being in pain all the time!

[SilverBirch7]

Ah you poor pet. You really have my sympathy. I’m surprised the lap didn’t reveal anything. Your symptoms sound very like mine. I have stage 3 endo but also addenomyosis and I think a lot of my pain is addeno. I get the leg pain but also the rectal and back. I had lap and course of decapeptyl but it all came back with a vengeance once I finished. Getting a hysterectomy in 2 weeks ( I don’t get on with the pill either). I was pain free on the decapeptyl and it’s unreal, you don’t realise how exhausting being in pain is. Keep pushing you are not going crazy it is VERY real. Best of love luck with it all x

[Nikkky]

Hi Jenny, as I read your post I was thinking ‘this could be adenomyosis’ and SilverBirch has also mentioned that condition. I had both endo and Adenomyosis too and as adenomyosis is in the muscle wall of the uterus it can’t be seen during a laparoscopy. I had daily back, hip, leg, vaginal and rectal pain plus bowel problems. I also found that pain relief really wasn’t effective. I found that the mirena coil kept me pain and symptom free for just 12-15 months, as the level of hormone released reduces each year and obviously wasn’t enough. Unfortunately as the symptoms are similar to endo it seems to get missed a lot. Also, I found that health professionals are even less knowledgeable on adenomyosis than endo. I would definitely ask your endo specialist if this could be adenomyosis and see what response you get. If it is dismissed I would assume they’re not experienced or confident in dealing with adenomyosis and seek another opinion. You are not going crazy and I know it feels that way as we’re continually made to feel that there’s nothing wrong and it’s all in our heads. Your symptoms are very real so please keep pursuing it x

[BloomingMarvellous]

Aw lovely one. Big hugs. First you’re not mad. Your pain is absolutely real. You’ve made enormous efforts to jump through their hoops and it feels disheartening to be where you are without clarity.

The pressure and pain can possibly be from Adenomyosis as mentioned and as you’ll discover it’s only absolutely determined if they remove the uterus and dissect. Sometimes it shows on pelvic MRI but not always. Sometimes the colour, misshapen uterus and over bulkiness of it is an indication. It can be missed. Your bowel can also have inflammatory issues as part of the endometriosis and that can cause significant pain and backache.

It could also be pelvic dysfunction from all the inflammation and pain. Or both. I found this podcast which explains what happens to the pelvic floor and can be severely challenged for many women especially with endo and adenomyosis. My pain levels are resolving working with the therapist in this talk and it’s a life saver for me.

open.spotify.com/episode/4P...

I hope you find the answer soon but keep on believing in yourself. Xxx

[Jennyjenjen01]

Thank you for your replies; the information and assurance is invaluable! I have looked into Adenomyosis and it does look pretty likely. I had my Colonoscopy this week and this was normal thankfully (i did expect this but, i did not want gynae to use this as a stepping stone with my rectal & back pain and bowel habit changes).

My Gynae follow up is next week so i will be armed with notes and i will politely ask for a hysterectomy!

[Nikkky]

Best wishes with it all. If you do end up having a hysterectomy and have your ovaries removed too please discuss hormone replacement therapy with the consultant before the op. It’s important to have it in place so you can start it right away. You want to avoid being thrown into a surgical menopause as it’s horrific. You’ll need oestrogen and progesterone HRT (the progesterone will help to keep endo at bay) x