Endo/ibs/perimeno/which one!?

[Kateos81]

Hi all. Very new here. I guess I’m just looking to see if anyone has any similar issues, a bit of reassurance and advise me on what the heck I’m meant to be doing!

Went on the contraceptive pill at 17 as I got the most horrendous pain that would make me pass out nausea etc and they were very heavy.

Fast forward to 39 came off pill. I had about 6 months off it early 30s but I bled consistently so went back on.

I’m now 42 and since coming off the pill I’ve had pain in my low left pelvis. It’s there most of the time but not debilitating. I have inconsistent bowels and I feel the left pain when need toilet including to pee sometimes. I get low back pain too and sometimes leg pain.

Had a colonoscopy-all clear, then had laparoscopy which showed endo in my pouch of Douglas. Was told I could have surgery but I declined for now as pain not horrendous.

The pain isn’t linked to my cycle either but I do get full pelvis pain when on period and aching arse/vagina and shooty butt pains. Sometimes I bleed after sex but not often. (I haven’t had kids btw!)

I’m also unsure if I’m perimenopausal too as the pain seems more consistent at the minute.

Now- I don’t know if I need to go back on the pill to manage hormones. What if the pain is ibs rather than the endo but assume its location means it’s the endo causing the ibs? Is it the perimenopause should I be looking at hrt?

I just don’t know where the heck to go now and I’m wondering if anyone is similar or has any advice?

So sorry this was so long I didn’t mean it to be lol!

Thanks all xx

[Moon_maiden]

Hi

I’ll briefly explain my scenario. I’d always had bad periods, got told by a GP around 18 to get pregnant. I never did anything about, never went on the pill. Fast forward to 50/51 in 2019/2020, pain most of 2019 that kept being ignored or gaslighted by GPs, paid to see Gynae end of 19 with Endo. I did have fibroids diagnosed not long before that but Gynae thought more Endo than fibroids. Had lap, confirmed pelvic wall, pouch of Douglas and on bowel, he removed some but too much for the time allowed. Hysterectomy in 2020, loads of fibroids, enlarged uterus, Endo adhesions.

Since had ops for bowel adhesions, gallbladder out, appendix out, liver adhesions.

I had adhesions from the inflammation caused by Endo. Various scans, no one can explain the pain so gone back to Gynae for another op to check for Endo.

I’m not a good example as I left it too late but I’m not sure if peri menopause or menopause kicked in and the balance tilted the wrong way.

There could be various things going on but Endo doesn’t have to be cyclic. I would definitely get a referral to Gynae and an MRI. As you know you have Endo make sure it’s to a specialist or at the very least someone who knows what they are doing. First Gynae I saw wasn’t technically a specialist but he knew what he was looking for.

Sorry bit long

[Tangoandmax]

Hey.

I’m a little confused, your say your laparoscopy confirmed endo in pouch of Douglass, you were offered surgery but declined? Did they not treat/remove whilst in there? The Endo is more than likely causing pain and digestive issues in that location I would think. Absolutely lower back pain and pain down legs. It’s worth noting I was fobbed off with IBS for years instead of getting an actual diagnosis with Endometriosis.

I’ve just had endo removed from pelvic walls/ligaments, I’m not certain hormones help pain from existing endo/adhesions. Just suppresses your own hormones to help hinder any further growth. I could absolutely be wrong though, every doc I have seen has certainly said something different. X

[Kateos81 in reply to Tangoandmax]

Thank you for your reply. So when I had the laparoscopy he said he burnt off some superficial bits of endo but the bit in the pouch of Douglas required maybe further removal and something he couldn’t do at the time. I just thought if it’s not that bad pain I don’t wanna have another one when I’ve just had one! Yeah I’m inclined to think it’s the endo causing the bowel issues I’m so bloated and gassy all the time as well. Just odd I never used to be like this! I do recall him saying he would give hormone drugs if I needed. It was a bit of a blur and I’m afraid I didn’t ask the right questions :/

[Tangoandmax in reply to Kateos81]

No problem. Sounds like more was needed, the burning also isn’t the best, excision is the better method for removal as it gives best chance at getting it all gone.

Completely understand that decision though, if someone would’ve woke me to ask given the state I was I would’ve been like no thanks. 😂 It does tend to get worse, they can’t be certain the hormone treatment does stop growth so it might be that things have progressed. I agree with moon maiden, absolutely worth a specialist check or MRI to see what’s going on.

I did want to mention but forgot earlier re. Bleeding post sex, this should be looked at with more urgency, my gp put me on two week referral for mine as it’s not normal. I had a cervical ectropian which has now been burned but they should be checking your cervix is healthy in the meantime.

It’s great isn’t it they come round straight after to spit a load of info at you, ask if you’ve got questions whilst you’re struggling to keep your eyes open 🤦🏻‍♀️ xx

[Sunset-lady]

I'm very very similar to you lovely. Peri menopause kicks it all off I'm afraid. I had excruciating back and leg pain. Pain during and after sex and bleeding. I went on HRT as I couldn't cope with peri symptoms. HRT was brilliant at first but the estrogen drives endometriosis and I ended up with fibroids and extreme bleeding. Took a 9cm fibroid out but I had 5 more 6 months later and so much bleeding. Went in for hysterectomy and they found endometriosis so couldn't do it. Went private and had a private MRI and met with an endo specialist who confirmed that I have stage 4 endo very similar to you. It's joined my cervix to my bowel and filled pouch of Douglas. I'm now on zoladex which is a rollercoaster in itself. Be careful with HRT. We are probably estrogen dominant to start with if we have endometriosis. I'm 51 and I don't want a bowel resection as it would be extremely risky and I don't want a stoma bag. I'm not in pain but I hemorrhage a lot. I can recommend Chia seeds which have transformed my bowel movements. You need to start slow with them as they pack a lot of fibre. I was diagnosed with IBS for 25 years but i never believed I had it. I try to eat Paleo now which helps a lot x good luck. Get yourself under an endometriosis specialist team xxx

[Kateos81 in reply to Sunset-lady]

Oh my gosh it sounds like you’ve really been through it I’m so sorry! I’m of the mindset of like to avoid hrt if I can everyone seems to say it aggrivates the endo. I feel so odd in that suddenly I have this pain everyday when I’ve gone so long being relatively ok. This is what makes me want to go back on the pill. Probably need to see someone your right I’m just putting it off for now 🫣 thanks so much for the tips I’ll give them a go!xxx

[EndoCoeliac_Woman]

So funny. I've the same. Mostly left pelvic pain, when worse goes also to the back and down the leg. In my case they found scar tissues caused by endo on my left ovary. They said they removed it but I believe they can't do much more than that and some pain will remain. Especially if there is endo growing and bleeding there. I also get a lot of pain with bowel movements. I had the uterus stuck to the rectum.

So. If it's unbearable get a consult for a surgery. If not. Keep it and do mobility (yoga) and relaxation to loosen the adesions. It helps with me.

Best of luck!

[Kateos81 in reply to EndoCoeliac_Woman]

Thanks for you message! It was the left sided pain that threw me off thinking it can’t be endo cos it’s only on the left! Reassuring to hear someone else with that issue it’s minefield! I’ve made a plan to try and do some stretching and some strength work as well to try help and trying to improve my diet. Hard work though not gonna lie!

[EndoCoeliac_Woman in reply to Kateos81]

Yeah food makes a lot of difference. I get worse symptoms when I'm gaining weight. While when I'm in low calories is way better. So try to avoid proinflammatory foot

[Sunset-lady in reply to EndoCoeliac_Woman]

This is exactly the same as me - if I gain weight it gets worse and it's all on my left side too and yes to pilates and yoga and tonnes of walking. Xx

[Bee-bee-b]

I too suffer very much from left sided pain and back and coccyx pain from my endo. I have spent years managing as best I could with diet, exercise and complementary therapies. Bowen therapy has really helped me the most. However since I’ve arrived in perimenopause territory I’ve found everything has become harder to manage. I’m currently trying to navigate my way through options. I’m on hrt at the moment and have found some peri symptoms have eased, however my endo seems worse. I have seen various bits of info saying that peri stage can be managed with progesterone only (micronised progesterone is the bio identical version which seems to be tolerated better) as estrogen in peri fluctuate and go very high the low again. So for us endo ladies supplementing estrogen at a point where it is spiking is risky. Unfortunately the drs I have asked about progesterone only seem to not be very open to this as it’s not following uk guidelines. Although those guidelines are for someone who doesn’t have endo. So that’s where I am at with it at the moment. Feeling like I’m trying to work it out for myself and not being listened to by medical professionals, which unfortunately seems very common for us endo sufferers 😕. I will post again if I find any more useful research on my journey.

The lady who has done the progesterone only research for perimenopause is called Dr Jerilynn Prior. She is a Canadian professor

[Sunset-lady in reply to Bee-bee-b]

I spent ages reading all about this and there is so much of progesterone therapy that makes sense to me. I'm confident I'm estrogen dominant. I'm on HRT too but lower estrogen to progesterone. I'm on utrogestan too as there's a lot out there to suggest progestin doesn't help endometriosis. I've found consultants (even endo specialists) very dismissive of this type of approach but there are some good books out there and Facebook pages where women are doing this. I'm on zoladex too as I have multiple fibroids which I think HRT contributed too. Everything flared for me in peri menopause. You may want to check out Facebook balancing hormones which is run by an amazing woman called Gemma. I've read all her stuff and it does make sense x

[Bee-bee-b in reply to Sunset-lady]

Thanks for your reply. Do you mind me asking if they have put you on continuous or sequential hrt. I’m on continuous and thought that was the right thing for endo. However I’ve just seen an endo specialist who told meI should be doing sequential. Which is very confusing! As I thought we shouldn’t have any time when the estrogen is unopposed by progesterone.

I will have a look for the facebook group you have mentioned

[Sunset-lady in reply to Bee-bee-b]

I'm on continuous and I agree, we always need more progesterone to estrogen as we already have too much estrogen. I tried coming off estrogen altogether but my mood plummeted so now I have 1 pump x I follow some ideas from Ray Peat too including the raw carrot salad. Worth having a look.