Hello, I am still in search of a diagnosis but my symptoms only started 9 months ago. I suffer from excruciating shooting pain in my rectum. I originally thought it was Proctalgia fugax but then I noticed a pattern: it happens 1 day before my period is due until the 3rd day of my period. My periods are not heavy and I don’t really have pain in my uterus. I have done a transvaginal scan but other than 2 cysts (1 corpus luteum and one suspected dermoid) they didn’t see anything. I also had a colonoscopy which didn’t show anything either. I recently had an MRI but only being seen by a gyno in May so no results (very frustrating). In the meantime I am traumatised and the countdown to my period is making me very very anxious. The only thing my GP said was take ibuprofen which doesn’t help at all. Does anyone have the same experience as me? I feel so isolated. The pain is so bad that my kids thought I had a heart attack Gd forbid! I can’t do anything until I have gone to the toilet for number 2. I am literally on the floor screaming. I have a very high pain threshold (had children without epidural and was fine) but this is something else. My symptoms don’t match so well with endo or Proctalgia so I’m wondering what is wrong with me…
Endo or Proctalgia fugax?: Hello, I am... - Endometriosis UK
Endo or Proctalgia fugax?
Hello, yes. This is my main symptom. I believe it’s endo related due to its correlation with my period and MRI diagnosis.
For me, the pain is akin to having a poker jabbed up your rectum and makes me stand on my tippy toes to try to escape the pain. Like you, it only happens around the time of my period when I need to open my bowels. Once I’ve been to the toilet the pain goes immediately.
I’ve chosen to live with it and manage it via diet and exercise rather than have a surgical diagnosis and intervention. Currently the risks outweigh the potential benefits of surgery.
Wow that’s exactly what I have!!! I do the same and stand on my toes but the pain has gone worse recently and the pain is so strong that I find myself on the floor withering in pain. Can I ask you a few questions ? Are your periods normal (no heavy bleeding or cramping) ? What did they see on the MRI exactly ? Did they suggest any treatment ? How do you manage the pain? I am trying for a last baby and it’s been 12 months of no luck, my other pregnancies I fell pregnant quickly (longest was 6 months) so I am eager to get it sorted as I suspect it is making me infertile…
So in answer to your questions:Periods are on the heavy side and painful, but controlled with ibuprofen/paracetamol/hot water bottle. That’s only needed for the first few days of my period.
On my MRI they saw a bulky uterus, possible adhesions to the uterosacral ligament and possible adenomyosis. A GP friend told me the ligament adhesions are quite likely responsible for the rectum pain. I’ve also seen on here that this type of pain is quite often associated with adhesions on the pouch of douglas. I have no idea if that would show up on an MRI or if that would only be found via surgery.
I would have liked to have had another baby but despite not using contraception for 10years, no luck. I’ve not pushed for further investigations or IVF as I’d rather that funding go to a couple who weren’t able to have even 1 baby. I just feel lucky to have my daughter even if she’s not going to get any brothers or sisters. I also suspect that my emergency c-section caused or made my gynae issues much worse, but who knows?!
Thanks so much for answering all my questions! I understand why you wouldn’t want to go down the route of IVF and myself not do that either but why not a laparoscopy? I have heard that the natural fertility rate increases after it… I’m hoping I will be offered one and increase my chances of becoming pregnant naturally. Also who analysed your MRI? Where you referred to a gynecologist? If yes, were they specialised in endo?
The gynaecologist analysed my MRI after they referred me for one. I requested that we started with the least invasive investigation first. Hence the MRI.
I’ve chosen not to have a lap because of the risks. For me, the risks of a lap do not outweigh the 2-3 days of pain I have each month and those risks are not worth taking for an uptick in fertility when I already have one happy and healthy kid. Especially since there is a small risk the surgery makes it worse or reduces my quality of life.
If I chose to have a lap in future it will be because that balance has tipped and I’ll be doing it in the hope it alleviates the symptoms.
Ultimately it’s a very complicated personal decision.
I completely understand where you’re coming from. To be honest another reason I was hoping for a lap is because I’m scared it’s spreading as my pain get increasingly worse each month. What works best for you to alleviate the pain?
I find that my pain is much less when I’ve kept up with my intentions to exercise if I’m honest! The fitter/healthier I am, the easier the period. Plus alternated paracetamol/ ibuprofen and a hot water bottle.
Hello! These are exactly the pain I have on my period, I used to be terrified for each period because of these. I used to sleep on my floor on my period so it was easier to get out of bed and deal with them. I got prescribed amytriptiline last year for chronic pain/emotions. I have found they have really help the butt cramps things and just general bottom pain during my period. They took about 3 months before I noticed the but cramps were happening less frequently. I haven't had butt cramps for quite a few months now (touch wood) and I'm almost certain it is down to the amytriptiline. The amytriptiline dosen't make me drowsy, however it can have that effect on some people, so its a bit touch and go. I take 10mg.
Thanks so much for your reply! Did you ever find out what caused the pain? How did you manage to get a prescription for amytriptiline?
Hiya, no I didn't. I still think endometriosis caused it. My GP said I should try it and wrote me a prescription 😊
How did you receive a diagnosis for endometriosis?
I haven't. All my scans r clear and I'm fighting to be put on the laparoscopy waiting list for a diagnosis 😊
Oh I see. Waiting for my scan results but since we have the same symptoms I suspect they won’t show anything… Do you have other period related symptoms?
I had the same pain in my rectal area every period but since I’m taking magnesium daily and am on the low fodmap diet its almost completely gone!
Oh wow! How much magnesium are you taking? I’ve been taking 400mg of magnesium daily for almost a year but it hasn’t really made a difference… What is the low fodmap diet?
hi, i have this too! like you i also have a high pain tolerance but this is something else… i also suffer with awful period pain and very heavy periods, had a laparoscopy and they found adhesions but no endo. i definitely think it’s gynaecological. i now take cerazette (mini pill) which means i have no period but i still have this horrific pain you are describing! i also get very sharp lower abdominal pain when it comes. hope you get some answers!
Thanks so much for your supportive message! Did they remove the adhesions when they did the lap? How did you manage to get a lap and how long did it take you? I used to take cerazette as a contraceptive a few years ago (well before the pain started) and unfortunately didn’t tolerate well as I was constantly spotting… I was thinking that the laparoscopy would solve all my problems by removing the lesions so I am curious as to why it didn’t work for you…
Hiya,
Yes they did. I started having symptoms of endo when I was 12, it took me 3 years to get a lap as I was never seen by a gynae until 6 months before. i had to go private as the nhs really didn’t want to do anything. to be honest i think there is some endo that was missed… as i was told my by my doctor it’s very unusual to have the adhesions but no endo. i would highly recommend having a lap if you are able to, but make sure that the person who is doing it is an endo specialist! i really regret not looking into the gynae i was seeing, i didn’t realise until it was too late that she wasn’t a specialist in endo. as for cerazette, i think i might have to come off it as i am also experiencing a lot of spotting. if you have any more questions please don’t hesitate to ask!
Thanks for the explanation. I have an appointment at an endometriosis clinic in a NHS hospital beginning of May so counting the days. I really hope they will take me seriously and not just tell me to take pills. It will be the first time ever that I will see a gynaecologist in the UK since moving here almost 18 years ago! In France women see their gynaecologist like their dentist: regularly! It’s really frustrating how long and how difficult it is to be able to see one here.
no problem at all! i used to have a french gp and once when i collapsed due to period pain he told me that he’d rather me get on the next plane to paris to see a gynaecologist over there than call an ambulance! the care we receive over here is absolutely awful compared to other countries. but i really hope the person you see helps you. sending lots of luck!
That’s so interesting because I was actually thinking of traveling back to France! My aunt’s husband is a gynaecologist and he told me he would get me seen by a specialist straight away. The only problem is that I have to leave my kids behind and sort out a lot of logistics but seriously contemplating the idea…
from what i have heard, the care in france is a lot better when it comes to gynaecology. so if you can find a way to do it then it’s probably worth a try! but even if you can’t go it’s still worth seeing the gynae over here.
Hi. I’ve had this for loads of years but just thought it was ‘normal’ for when you’re on your period. I’ve only relatively recently (~6months ago) been diagnosed with advanced endo, so I reckon it could be related!
Interesting! How did you get your diagnosis?
IBS or bowel Endo?
Is it endo? 
"1 spot" of endo, but loads of pain...
Endo or not
Endo or bowel problems?!?
