Endo symptoms becoming more prolonged

[Kellt]

Hello Ladies,

I'm new to this forum, Ive PCOS diagnosed 16 years ago, one burst cyst and fertility issues due to very irregular periods. About 8 years ago my period started to become very regular and for the last 3 years I've been clockwork but I have also developed horrendous pain during my period. I found that I was almost debilitated for first 2-3 days of my periods but not true period pain (from what I remember back in my early teens). (TMI alert) I started to really struggle with being able to wee, poo and even pass wind. I remember googling painful pooing during a particularly bad period which my me cry out in pain when I tried to push. Even this googling didn't greatly throw up any light on the subject and alluded to IBS but as these period were getting worse endometriosis came up more and more when googling. I was really fortunate for about 18months that I came on my period on a Friday evening and was floored all weekend but now I'm tending to start my period on a Monday /Tuesday and I'm struggling to keep working due to the pain. Last month was first period I had to ring in sick at work and felt fraudulent saying I'm struggling with my periods but I couldn't even sit down properly due to pain. I saw my gp and shared that I think it may be endo and he agreed and I'm due to have first scan and consultation in two weeks.

I'm just coming to the tail end of my period but find they are getting worse. I guess my primary symptoms are immense pain when trying to wee and poo and painful bloating. It hurt to pass tiny amounts of wind. I have struggled this period with wind and bloating but have found that I haven't been able to pop for 2 days and seem that my bowel has slowed down over the period. I can only explain this as feeling like I have been backed up. I have had loads of pain & bloating today but only just feel normal ish have just done my 5th poo today.

I'm really sorry about this post but no googling is uncovering anything. Does anyone every suffer similar...Really struggling with wind and bowels even after period ended? It feel like I have held onto my poo because it simply couldn't pass out and I had lower abdo pain near belly button all week long with list of wind gurgling. It feels like I'm way to bloated to pass stools and hurts a great deal.

Thanks for taking your time to read this lengthy moaning post. I'd really value any experiences or advice.

Many thank you

Kelly

[mierran]

The high progesterone levels before your period can slow down your intestines and add on to that the pain during your period...

I have had infiltrative endo removed from my bowl and have extensive adhesions. I get really sharp stabbing pain when my stools pass a certain point and often have to try and not scream in pain when actually passing them. ( I also have nerve damage and a rectocele)

I find making sure I take enough fibre and fluids ( I use fybogel ) helps a bit. I also find having a small stool in the bathroom and putting my feet up on that helps the pain of passing. The drs have recommended lactulose but it caused me a lot of bowl pain so I stick to the fybogel. I find keeping active helps keep things moving too.

Good luck with your appointment and getting to the bottom of everything ( boom boom , excuse the pun)

[Kellt in reply to mierran]

This has been really helpful thank you. I'm going to get some fybogel now, I tried upping fluids prior to period starting but it's not helped. Going to try and see if using a stool would make a difference. I'm almost certain I have some bowel infiltration but will need to wait and see.

Thank you for the info and advice

[NW248]

What sort of scan are you having? I had just the same symptoms you're having and they kept sending me for ultrasounds and telling me that there was nothing wrong with me. An ultrasound won't pick up endo but an MRI on the more modern machines will. You really need to insist on seeing one the specialist on the BSGE list (bsge.org/clinic ) as these are the only ones who the NHS say should be dealing with endo where there is bowel involvement. The problem is that most gynaes fail to diagnose that endo is the problem so don't refer to a suitable specialist.

[Kellt in reply to NW248]

Ooooh right I didn't know this! I'm going for an ultrasound and consultation straight after. It seems like my NHS trust have brought the gynae services from a company called harmonie care (or something like that.... I can't remember without looking at the referral letter)

I did wonder what an USS would be picking up really. I'm going to look at the list now. My colleague had a terrible time with her endo and was treated at the same trust I am going to and she said it's a specialist centre so I'm hoping to find it on the list.

Thanks so much for this information.

[NW248 in reply to Kellt]

I think a lot of medical people think that a ultrasound will pick up endo so assume that if the scan is clear you can't have it.

[Kellt in reply to NW248]

I have just checked and it is an endo centre with what seems like a comprehensive service, gynaecologists, urologists, specialist nurses, colorectal surgeons and a pain specialist. I feel hugely relieved now but still a little unsure of this initial referral process. I hope I get referred onto the team.

Thanks so much for this

[NW248 in reply to Kellt]

Anywhere where there is a specialist centre should have good links between the standard gynaes and the specialist. So you should be OK.

[Poorna66]

I have suffered from this for the last 3-4 years. I have these problems throughtout my periods, a couple of days after and during my ovulation. Some days it is so bad that i have to take strong laxatives although i try very hard to avoid that. Unfortunately i think these problems are pretty common in endometriosis when it starts spreading to the bowel. Like Mierran said, eating fibre and drinking lot of fluid helps a bit. Also try to make sure you don't eat stuff that is difficult to digest during your periods. Most junk food items, diary, fried food, artificial sweeteners etc come under this category. Maybe also try eliminating gluten for those few days and see if it helps.

Another thing that helps is a self abdominal massage. Google "abdominal massage for constipation" and look at the videos. It is very simple and helps moves things along.

Good luck for your appointment, and hope you are able to find a solution soon.

[Kellt in reply to Poorna66]

Thank you I'm going to look into the abdo massage. I have been on the slimming world plan for 2 last two weeks and avoiding gluten really has eased a few symptoms. It feels like I start with discomfort and bloating just after ovulation, peaking a day after the period starts and won't fully ease until about 2-3 days after period ends.

Thank you for this info, everyone has been really helpful