Proctalgia fugax

[Chroniccryer85]

Does anyone else suffer from this? Is it endo related or.... ? Incase you don't know the term, I'm referring to the sudden sharp crippling pain up your butt that feels like it's going up inside you 😭 I used to get it when on my period but since having endometriosis it's sooo often. Is there anything I can do to stop it? It literally takes my breath away and I could be in the most random places when it happens, people look at me because I can't disguise my pain.

[JEWM]

you have the fancy words, I call this ass lightning 🤪 …… I have no tips I’m afraid but hanging around to see if there are any who do!

[Chroniccryer85 in reply to JEWM]

Lol, it's what my Doctor called it 🤣 it's a real pain in butt 🙈 it's so painful isn't it, my whole body goes into shock and it's always in the most awkward place and time!

[JEWM in reply to Chroniccryer85]

I spoke to my gynae about it at initial consult and apparently its not ness endo, but will be worse where there is reason for the muscles there to contract, so can be worse where endo is present and can be an indicator that endo maybe present for this reason.

I used to get it maybe once or twice a month, it was really frequent during last couple of months of a pregnancy years ago, but since endo kicked in it is much more frequent without obvious triggers.

[SunriseStars]

I get this too! Drs have never suggested its this but it sounds exactly like you described. Again sorry but I have no advice to give, hope to see some more comments on this! X

[RWilliamson]

I had a horrible period of this, I literally would wake up at 3am to put ice on there until it passed! Sorry for intrusive question but do you have constipation too? I tried all sorts but the thing that helped was getting a sitz bath. You fill it with warm water and it fits in your toilet, it really helped relax the muscles. I also started taking a stool softener regularly which helped. It was the most painful thing ever so sending hugs! Once I did regular sitz and softners it went away and (touch wood) it hasn't been back x

[Sabrinacolada]

Hi,

Yes I am also afflicted with this. Its so awful isn't it? Earlier this year I was waking up at night from it. It seemed to be far more severe coinciding with worse colorectal symptoms ( constipation, passing blood, bloating, naseua). I have stage 4 with adenomysosis and colorectal involvement. A rectovaginal nodule and para rectal lesion were removed ( alongside ureter lesions, my left ovary and fallopian tube) in September 23. Unfortunately there is now scarring in the rectovaginal area and actually a nodular area of fibrosis where the old endo nodule was!

I have found initally post op it got worse but now I certainly have this less thus I would account it to the endo lesions being removed/ less active. I still get the odd twinge, and due to nerve damage can't defecate easily without prucalopride so by all means am not cured but the surgery certainly made the signs bearable so far . However so far I have had less of the intense, stabbing rectal and vaginal pain plus I no longer pass blood.

Do you know if you have colorectal endo etc? In my case an MRI found the nodule.

❤ Sabrina xx

[Trinity613]

I also thought it was Proctalgia fugax that I suffered from (from searching my symptoms online) but then realised it was happening mainly around my period and worst during the first 2 days. I asked for further tests as the pain was unbearable (worse than childbirth!) I had an MRI which confirmed thickening behind my rectum consistent with endo. I have since become pregnant and had a baby and the pain stopped completely with the end of my period so I know it’s endo and not Proctalgia fugax. I havent found a remedy yet but have come across the following leads: suppositories that give instant relief. The names : Diclofenac, Diazepam, Buscopan or even CBD suppositories. If your GP is willing to prescribe any of them to you then you’re in luck and please let us know if it worked. In my case they refused to prescribe it 😡😥.

[S0nrisa]

I’m sorry you are experiencing this too. I find the only that helps me when it comes on when I’m out and about is to squat down. I’ve done this on many an occasion - in the supermarket car park, on the bus stop, hotel reception. I hope you find something that helps you until the pain passes. I still don’t have an official endo diagnosis but believe it’s at least hormone related given the patterns. Take care.

[Dorothy659]

Maybe a pelvic floor therapist can help. It could be your pelvic floor muscles are also too tensed which makes it worse. Relaxing and stretching the muscles can help. I am a a pelvic floor therapist myself and have seen it work with most patients. Good luck!