More confused than ever....bowel Endo concerns.

[EbonyP]

I'm Confused & stressed and looking for as much experienced advice as possible.

I'm 28 years old and After an incredibly lengthy wait of intense pain, back & forth doctors appointments, scans, ultrasounds, poking & proding, sleepless nights and countless tears I have FINALLY got my Lap booked in.

I have suffered from bad periods since I was 12, heavy bleeding & terribly painful for the first two days of each cycle, as a result I was put on the pill at age 14, which helped slightly but didn't cure the problem.

Over the past 16 years I have maintained regular periods, although they have always been every 20ish days rather than 28 days.

Due to having regular periods I have had many doctors over the years that have continued to disregard endometriosis as possible answer to my problems:

Bowel cramps / leg pain / bloating / vaginal pain & discomfort / frequent urination / pain during sex/ heavy painful periods / hip pain / pelvis pain / frequent headaches / ovulation pains ect ect.

Finally I now have a doctor & gynae who both believe without doubt my problems are all Endo related, my first Lap has been booked and is only a couple of weeks away (Thankfully).

over the last few months I have spent a great deal of time reading & researching Endometriosis and the more I learn the more confident I am that my Lap will reveal my suspicions to be true.

My concern is now that my Gynae believes (without having looked yet) that my bowel cramps, mind you these are bowel cramps so painful that I have on occasion passed out from, bowel cramps that are at their absolute worst on the second day of period, right before a bowel movement I get sharp intense pains...almost like a stabbing sensation up my bottom, pains I have screamed from, been woken up from, been knocked to the ground from ect ect....now my gynae is trying to tell me it's unlikely that those pains are related to my suspected Endo & he suggests seeing a bowel specialist as he believes I may have Endo & Bowel problems.

It's a lot to think about, especially whilst feeling nervous about the situation...but I'm curious to know if anybody has any experience with symptoms similar to mine or regarding bowel Endo that they can share.

I'm in over my head here and torn between listening to my Gynea and listening to my gut & would very much like any/all advice, opinions & stories as possible.

Thanks lovelies xx

[CoralJ]

Hi EbonyP I am due to have my lap in 2 weeks to diagnose endo. I have sharp pains I my rectum too, as well as all of the usual pelvic pain, back pain, shooting pains every were too. They have tried fobbing me off with it being bowel problems too. I know that this is endo instinctively, no person should be in this amount of pain. Just want to let you know to keep fighting don't let them fob you off trust your body. I hope your lap goes well and you get the answers your searching for.

Coral xxx

[EbonyP in reply to CoralJ]

Thanks for the reassurance, always nice to hear from people who are understanding of the situation.

I'm sorry to hear that you too are having your first lap soon, I hope it goes well for you and you have some relief from those nasty symptoms & pains. Xx

[Mabes]

I had the same pains. For me they were at their worst during the first 3 days of my period. I passed out too. I literally had to crawl to the toilet and once I was on it, I could not get up and leave until I had had a bowel movement. The pain was the worst pain I'd ever experienced. It was a mixture of pain in the bowel and pain in the rectum and seemed to build up as my body needed to pass a motion - like giving birth to a rock except it was not constipation. I used to take 3 movicols within 90 minutes (one every half up our) each morning on those first dew days so that my stool was going towards diarrhoea as the pain when it exited was so sharp and took my breath away...

I also had the most wicked painful gas pains. I generally didn't have a lot of gas normally but round my period and ovulation I seemed to produce loads and passing each one was like farting knives or needles or something.

So anyway, for me these pains did turn out to be endometriosis, but not on the bowel itself. I had my endo excised and while it has not totally resolved everything (still struggling with bladder/ovaries at times) it HAS taken that pain away. I can now poop without dying on the loo. I would say any bowel pains or rectal pains I have now are minimal and bearable - just slightly uncomfortable sometimes afterwards.

[EbonyP in reply to Mabes]

Thank you for the advice & I'm sorry to hear you have experienced the same pains.

Great suggestion with the Movicol, sounds like it gave you some relieve I will keep that in mind.

My pains are horrible just like yours, I find myself dreading my period and genuinely being fearful of the bowel pains associated with it.

[Mabes in reply to EbonyP]

I had the same dread/fear. It's like hell.

The best thing I can advise, aside from excision surgery, is in the meantime to take opiate based pain meds (on top of an NSAID like Naproxen) for the first few days of your period. The opiate gives much quicker pain relief so as soon as I got up I'd take it (as I normally would go after breakfast or mid morning) to try to take the edge off the pooping pain. It just stopped me from passing out. Still incredibly painful tho. I hope your gynae is wrong and this is resolved by your surgery.

[Mabes in reply to Mabes]

P.S. is the gynae an endometriosis specialist?

[EbonyP in reply to Mabes]

Thanks for the suggestion, I'm currently being prescribed pain medication and whilst I don't like having to rely on medication to feel "normal" I must admit it does give me relief at times. Unfortunately the troubles with my bowel and in particular the bowel pains during my period aren't any less painful due to medication.

I'm starting to wonder weather having a male Gyno is a good or bad thing, I can't help but think being male he is slightly less understanding / sympathetic to these pains and problems.

I don't doubt that his qualifications and abilities are any less significant, just wish he had of acknowledged my concerns differently.

[Mabes in reply to EbonyP]

I agree about the male thing. I found more empathy from the female gynae. The male ones were very clinical and matter of fact - very unempathetic.

One of the things I feel is that if they are saying no it's not endo related, then I would like to know the reason that they are so sure... How do they come to this conclusion... If they could tell me that, I would find it easier to understand and accept. Instead there is like a brush off comment and to the patient it may make no sense/not be apparent how the doctor has come to this conclusion. I had this with my spine and hip pain - just dismissive (as it being endo related) from the consultant and no explanation of why.

[EbonyP in reply to Mabes]

AGRRED AGREED AGREED!!!!

have you found any relief for your hip and back pain yet?

My previous GP was very dismissive of my leg pains (my upper legs feel heavy, very very heavy and sore)

& he was adamant that the pains were sports related and nothing more.

The more I learn about Endo the less I believe about previous medical concerns being unrelated. X

[Mabes in reply to EbonyP]

No I haven't. I'm still trying to get help for it. I can hardly sleep or stand because of it. I understand that as the majority (or supposedly all) of the endo was excised during surgery, my pain is considered less likely (or totally unlikely according to specialist) to be related to that... Thing is, I do have a retroverted uterus (which seemed to develop/come with the endo) and wonder if that could be contributing or causing the pain.

What confuses the issue for me is that I never had any lower back pain before endometriosis was already evident - so that's a big part of the reason I wondered at the connection and was disappointed surgery didn't relieve this pain. I only had hip pain in that hip when I had a massive ovarian cyst (as a child) and once it was removed that pain went too.

When I asked the surgeon at my post op consultation about it being linked to endometriosis - he barely acknowledged my question and just brushed it straight off (very flippant) with no explanation or reasoning. I'm to discuss it with the GP apparently, so I shall try that and see what happens.

Your pains could be related - I have read of others with pelvic pain who've complained it extends into the thighs and that feels heavy. I don't see how a GP can be so sure either way!

[EbonyP in reply to Mabes]

Sounds like you have a lot of unanswered questions too.

The pains certainly sound related and as always a doctor will never understand your body as well as you do.

I hope for your sake they can either find the relationship with your pains and endometriosis OR find the reasons why you are experiencing these problems.

Too often Specalists (not just Gyno) are passing the buck to a GP instead of digging a little deeper to find the answer.

So many times we hear the same old "you'll need to see your GP about that..."

Which I always think of as being sent back to square 1.

[Tboag]

Hi hunny, sorry your suffering, but at least you have been listened to now, I have had very similar pains to you and periods, I was diagnosed with endo and adenomyosis, and had my endo excised in March, unfortunately it didn't do much, so ive just had a hysterectomy for my adenomyosis and as yet I'm still having bowel pain, but hopefully that's just recovery op pain,

Before you go anywhere else you need to no where your endo is and what stage you are, lots of ladies have bowel pain with any type of endo,

Good luck with your lap let us no how it goes

[EbonyP in reply to Tboag]

Thank you for your well wishes and concern.

I'm sorry to hear that you are still in pain after your hysterectomy, when was your surgery?

I am surprised to see just how many people are affected with Bowel problems due to endometriosis, weather it be directly or indirectly everyone seems to have some bowel related concerns.

I don't feel as though my Gyno has a full understanding of just how painful these bowel problems are. I'm certainly going to go with my gut and try to make it clear in future when talking to my doctors.

It's fantastic having a page like this for everybody to share their experiences and show their support for each other, I certainly feel a lot less paranoid about my symptoms for having shared my experience and learnt about others.

Thanks again & all the best with your recovery I hope you are pain free very soon. X

[Elwood]

Hi EbonyP, has your Gynea not discussed deep endometriosis? It is really common for the involvement of the bowel with endo, I have had my bowel operated on 3 times and it was all endo, nothing else and I had very similar symptoms to you. However if you do have endo on the bowel it is normal for a bowel specialist to attend the surgery as gyneas generally are not let loose on the bowel so the involvement of the bowel chap is a good thing. Maybe get in touch with your gynea and discuss deep endometriosis?

Best of luck with your lap xxx

[EbonyP in reply to Elwood]

This is why I am loving this page....

Honest understanding answers....THANK YOU.

Sorry to hear about your experience but thanks for sharing it.

My Gynea didn't discuss much with me at all, he said he preferred to leave most discussions and options until after the lap.

He disregarded my bowel problems and said to see a bowel specialist or discuss possible IBS with my GP. I didn't want to push the issue until after my Lap, so I'm hopeful that my lap will give answers to all my concerns.

To be honest I think he was more concerned with discussing fertility issues than Endo.

How are you now after your surgeries, do you still suffer from these same pains? Hope you have found some relief xx

[Elwood in reply to EbonyP]

No problem at all, it's great to be able to help other endo ladies, I was so alone when I was diagnosed nearly 10 years ago, this is a great resource and support network.

I generally get relief from Surgery and my surgeons have done a good job so far, unfortunately this week though I am pretty certain I have had a cyst rupture which is pants because I am only 8 months post resection Oh well we just get on with it hey! Previously I have had a good couple of years with minimal symptoms after surgery, so if done properly you can rightfully hope for relief xxx

[EbonyP in reply to Elwood]

Sending you well wishes, hope your pain eases soon and is nothing too serious. X

[mikkid88]

Hey hun I had the exact same pains and was diagnosed with endo about a month ago. They also found endo on my bowel and in my pouch of Douglas thar they didn't remove as they need a bowel surgeon and I wasn't bowel prepped.

If they find the same for you I can only guess it would be the same as a gynaecological surgeon shouldn't really be touching bowel endo from what I've read.

Listen to your gut I had to change gps after years of not being listened to and told there's nothing to be done you know your body better than anyone

[EbonyP in reply to mikkid88]

Thanks for your response.

Sorry to hear about your Endo experience,

How are you now? What's the next step for you? X

[mikkid88 in reply to EbonyP]

I'm still in pain where there is endo left on the bowel. I'm meeting with the endo specialist in October to talk about booking the surgery for the bowel. After that it's hormone treatments .

I'm sorry you're having to suffer as well but at least we aren't all going through it alone x

[EbonyP in reply to mikkid88]

Good luck for October.

Let us know how you go? Xx

[Bride2be]

So interesting reading all of these posts ladies. I just put a question up about endo, bowel pain and sciatica. The Gynae and GP Just keep fobbing me off and don't seem to think the agony during some bowel movements is significant.

I'm so sorry to read that other women have these pains too. It's so embarrassing admitting it but I nearly fall off of the loo because of the pain sometimes.

Back to the GP? Don't know what to do 😓

[EbonyP in reply to Bride2be]

Hearing of other people experiencing these pains & problems is such a bitter sweet moment, it's not nice reading about people being in pain although on the other hand it's nice feeling a little more "normal" in knowing that others have the same issues.

Not feeling listened to by your doctor is by the sounds of things, a common problem, I too was in the same boat and it just makes everything that much harder to deal with.

I hope you can find a doctor that listens to your concerns, my only advice would be keep trying until they acknowledge your concerns. Even if that means changing doctors until you find the right one.

Good luck xx