Pain that comes and goes post-period, worst at night?

[gettingusedtoendo]

Hey—if anyone could advise me here I would really appreciate it. My consultant is quite dismissive and there’s not a lot of information out there as far as I can see.

Although I have cystic areas and adhesions seen via MRI, I have not yet been diagnosed with endometriosis as my consultant wants to examine me internally before laparoscopy. He kept telling me I ‘do not fit the typical picture of endometriosis’.

This is obviously worrying me because, as they have found the above damage to my body, what on earth else could it be? They have ruled out PCOS through blood tests.

I think my symptoms might be a bit unusual. I get v heavy but pretty painless periods, that are regular, but the pain comes on days after my period finishes. The pain can last a week to ten days and it comes on for periods of time, often in the evening and most painfully at night/early hours. Sometimes I am writhing around in acutal agony, with pain radiating out from my rectum area and up to my lower back and down my thighs. These times painkillers don’t make a dent. Other times it is just there, a low level pain that I can mask with painkillers.

For ages they thought I had levator ani syndrome until the MRI results came in. I wonder is anyone else’s endo hits them only after their period and isn’t painful all day long? Should I be worried thst something else it at play?

Thank you

[Lindle]

Not everyone has painful heavy periods with endo or cyclical symptoms. Some people have varying symptoms most of the time and others randomly. The symptoms you have described of 'pain radiating out from my rectum area and up to my lower back and down my thighs' are actually more typical of endo than period issues and suggest endo that has been left years to develop whilst being dismissed.

When you say cystic areas have been seen on MRI do you know if the type of cysts has been reported - are they called endometriomas? If so then that is a confirmed diagnosis of endo and accompanying adhesions would be typical of neglected deep disease.

[gettingusedtoendo in reply to Lindle]

Thanks for so much for taking the time to comment. The letter I received following my MRI mentioned ‘multiple cystic areas within the uterus ... with ectopic endometrial glands and evidence of fibroid adhesion between the rectum and retrosigmoid with the uterus’. Which sounded pretty scary when I first read it. That was a different dr (gastro) as I was referred to gyno and gastro separately. The endo specialist seems to almost act as though these findings don’t exist

[gettingusedtoendo in reply to gettingusedtoendo]

Lindle sorry to bother you but does the quote above match what you said about neglected deep disease in your opinion? My pain only started about a year ago. Thank you

[Lindle in reply to gettingusedtoendo]

Multiple cystic areas within the uterus suggests fibroids. Ectopic endometrial glands and evidence of fibroid adhesion between the rectum and rectosigmoid with the uterus is a typical description of deep rectovaginal endo. Ectopic endometrial glands essentially means endometriosis. Fibroid adhesion refers to fibrosis which is deep endo. Fibrosis is the result of the chronic inflammatory process of endo causing scar tissue that infiltrates normal healthy tissue and replaces it with diseased tissue. This sticks things together and in rectovaginal endo the junction of the rectum and sigmoid colon is the usual area to be affected and gets stuck to the uterus/cervix.

[gettingusedtoendo in reply to Lindle]

Thanks—do you have medical training?

[Lindle in reply to gettingusedtoendo]

No, had endo undiagnosed over 20 years and had to research to find out what was wrong and how to get treated. Have researched ever since.

[Smokey2020]

Hi there. I have been diagnosed via MRI with stage 4 endo, adenomyosis and awaiting surgery. I have similar situation as you. My periods are not always painful , are also regular and can be heavy but also light. I would say my pain is heightened for 10-15 days after my period covering ovulation rather than during my period. I find it is always worse at night. It radiates from ovaries, uterus across my back and abdomen and down hips and thighs and rectal area. My pain is progressing to becoming all day but definitely worse at night and definitely during the 10 days after my period. Hope this helps a little.

[gettingusedtoendo in reply to Smokey2020]

I am so sorry you are going through this too. May I ask if you were ever told why the pain presents worst at night? Thanks so much for taking the time to comment.

[belle555]

After being diagnosed I’ve been talking to female family members about their experiences. I get a lot of pain, as to my maternal aunts and grandmother who have been diagnosed.

On the other hand, my paternal aunt has never had painful periods. She never fell pregnant in her 20s or 30s and didn’t think that was on the cards for her, but when she had her son in her early 40s, she required a caesarean and the doctor told her after that her endometriosis was so severe he was amazed that she was pregnant. Not having raging pain all the way through your periods doesn’t necessarily mean anything! I would talk to family members about their experiences and see if they have had something similar to you, or more typical endometriosis symptoms. My dr diagnosed me based on the family history and pain alone!

[gettingusedtoendo in reply to belle555]

Thank you, this is really interesting— I guess maybe there is no ‘typical picture’