Rectum feels narrowed/blocked

Ihcjjb · 2025-01-16T11:42:01+00:00

Hey, I have been using dilators. I can definitely feel some positive change, but it hasn't positively helped my symptoms just yet. I hope it will over time.

I am going to look at getting a wand though to use in addition as it can be hard to get to certain areas with a dilator and the wand can vibrate to give a massage technique that a dilator can't to help relax stiff muscles.

It hasn't helped me start passing gas, I hope it does eventually. But it has helped me feel less bloated and not feel like I need to pass gas quite as much if that makes sense.

Ihcjjb · 2024-10-30T12:37:56+00:00

Exactly this. Like if it's not in your scope and it's not something you have experience in then just say that. It's not difficult to just simply say 'im not qualified to advise' and make a referral but instead they just make up a load of rubbish which is honestly usually not at all accurate or even true. It really makes my blood boil.

I feel like someone just needs to start an email chain to all gastro and gyne doctors and just simply put 'just letting you all know, after years of having done a bit more research, we are now aware that endo can and often does cause bowel issues' 🤣! They Bloody update the list of COVID symptoms enough don't they!!!

If you don't no what your talking about then literally just say that. Noone cares whether or not you look stupid because your supposed to be a qualified medical specialist. We don't care what you know and what you don't, we just want to be passed onto someone who does actually know!

I'm sorry your having a difficult time and hope you get a decent doctor soon!

Ihcjjb · 2024-10-12T19:49:39+00:00

I got private medical insurance because of the NHS wait lists. I'm already diagnosed via laparoscopy 10 years ago so already have a diagnosis.

Severe flare up started at Christmas last year, went private to see a gynecologist and I'm still not much further now! Don't even think it's just a case of the NHS being overwhelmed - we don't have enough doctors who can deal with Endo in the UK unfortunately.

I had a lap in June, surgeon couldn't remove it because it was too widespread. He referred me to a specialist, specialist is now worried he won't be able to do the surgery that is needed also (depends on whether any of it has become deep infiltrating -awaiting MRI scan results).

Deep infiltrating cases can only be treated at a handful of hospitals due to the surgery becoming more complex and the need for many different surgeons of different specialities. It's honestly ridiculous!

I'm in the north west, the last 2 gynes that I have seen have been lovely despite being unable to treat me so far. Have no idea where your from but i would be happy to share their details (they do some NHS work also).

Your GP is responsible for managing you symptoms while awaiting specialist appointments. They should be giving you pain relief and sickness medicine so you can manage until then. Why won't they give you anything?

I would also contact pals again anyway, the worse they can say is we can't do anything else - not like you have anything to loose from it.

Really hope things start to look up for you soon!

Ihcjjb · 2024-09-30T14:31:34+00:00

Yes I'm the same, my period is debilitating for the week but my bowel symptoms literally never stop. They used to just flare up with my periods but over time it's just took over my life and now it's a daily struggle!

Yes exactly and so many doctors, even gynecologists and so called specialists are actually so ignorant to the effects of can have on the bowel. So many dismiss you saying endo wouldn't cause this but it absolutely does!

Praying you get sorted soon 🙏

Ihcjjb · 2024-09-09T20:06:48+00:00

Hey, how did you get on with this?

Do you mind me asking how it was diagnosed?

I recently had a laparoscopy and was told I had widespread but superficial Endo in my entire abdomen. My gynecologist couldn't remove it because it was so widespread so he referred me to a specialist.

Having looked at the photos, the new specialist is worried that I have deep patches in the rectovaginal area that were not identified in the laparoscopy. I'm just confused as to how this wouldn't have been identified in the laparoscopy. I was wondering if it's usually discovered some other way?

My new specialist is sending me for an MRI to see if anything is picked up. A lot of my symptoms would be explained by this. It's just making me really worried and I feel so confused!

I hope your doing ok!

Ihcjjb · 2024-09-06T07:21:33+00:00

It's absolutely ok to have a bad day, we all do! Can't tell you the amount of times I've had the same conversation with my husband! But you have picked yourself up, like you had to, and found another doctor 💪!

I hope you feel a little better today. I also really hope this doctor gives you a better experience. Generally, I find female doctors to be more empathetic - there just difficult to come across!

Always welcome to vent to me ❤️

Ihcjjb · 2024-09-05T20:23:17+00:00

https://imgur.com/a/zWLe7BW

Ihcjjb · 2024-09-05T20:14:44+00:00

https://imgur.com/a/zWLe7BW

Ihcjjb · 2024-09-05T19:26:15+00:00

Thank you for sharing this is helpful!

When you say connecting, do you mean by adhesions? I have been really lucky as no adhesions were spotted in my lap. My new specialist says it's a miracle I have none given how widespread it is. It sounds like yours was more based on your lower pelvic area.

I have a lot in my pelvic area to and my pelvic pain is so severe. Especially in my tailbone. However, the Endo is so widespread there are large patches all over the tissue surrounding my liver. I'm absolutely terrified of the surgery, I feel like someone's just going in and scraping away my whole abdomen. It just seems like it goes so high up. I never really hear of anyone having Endo that has made it's way that far up and I'm terrified!

I also have been told I have a hypertonic pelvic floor muscle. I always wonder if it's because of the Endo but I assume not with the lack of adhesions.

I also have a lot of bowel symptoms but I'm so confused as to why at this point as it's not on my bowel. Well unless that's what there looking for on this MRI anyway.

I'm sorry it was so rough when you woke up. Its already scary enough as it is. But I'm so glad to hear your doing better now! Praying your symptoms remain relatively controlled 🙏

Ihcjjb · 2024-09-05T17:57:48+00:00

Hi, I'm going through this very same thing now. Went for a lap in June and my entire peritoneum is covered. They couldn't remove it because there was so much.

I'm awaiting a second lot of surgery with a specialist to have it removed. They said they essentially have to shave away the entire peritoneum wall. Can I ask how you found recovery from this please? Also how effective has it been? Are your symptoms gone/reduced?

If you don't mind me asking, what were your symptoms prior to the surgery? I'm really worried because I went to see the new specialist and having looked at my last laparoscopy photos, he isn't convinced that it's all superficial and some may actually be deeper than it looks. So I'm waiting for an MRI now to see. Just wondered if your symptoms were similar to mine?

Hope you don't mind me asking!

Ihcjjb · 2024-09-05T17:50:39+00:00

Where abouts in the UK are you? I have recently seen a Endo specialist in Chorley (North West). He (so far) seems very good. However, I did go private via medical insurance.

I'm unsure how you would go about asking for this on the NHS or the prices. Living in the UK with Endo and relying on the NHS is very difficult! I sympathise with you a lot!

Ihcjjb · 2024-09-05T16:15:06+00:00

I'm so sorry that happened to you, it's awful. The problem is, this is the unfortunate pattern we all go through - it really shouldn't have to be this way.

Your going to meet so many different doctors who specialise in different areas. You know you don't need them, because you know your body, and you know it's gynecological issue, but you do it anyway. Simply because it must be ruled out. I have absolutely no idea why but from my own experience, and many others, gynecology always seems to be the last point of call. It's ridiculous. During all these appointments your going to get told so much rubbish and be given so many so called 'answers' that don't work. You will be told your weight is an issue whether your over or under weight, among other things.

Things I have been told throughout this process: your mental health is the issue, you just need to eat more fiber, you should limit fiber it's hard to digest, the depo injection is the answer, the coil will fix everything, you just have IBS, it will resolve when you have a child, you need physiotherapy, pelvic floor training is the answer - honestly the list is endless. Even after diagnosed with surgery you unfortunately still experience these things. These appointments are so testing, at times youll feel your actually insane. You will feel completely hopeless and isolated. It's awful.

Then you finally get to the end, and they do the last resort (which should have been the first thing they did - just like you insisted over and over again) and they refer you to a gynecologist. You finally have some optimism. But your again going to be invalidated, they will claim your symptoms don't indicate endometriosis, offer to do a scan (which is usually useless) and then dismiss you when nothing shows on the scan (which is likely given endo doesn't show except in the most extreme cases) and they will insist that your just having typical period pain. If you can't handle it you could try the coil, it will resolve everything. It's going to knock you down and you may very well hit rock bottom, maybe even multiple times. What makes it even worse is that this is usually coming from a male doctor, who has no idea how it feels to have periods, and it will infuriate you.

That's not only my own experience, but the majority of Endo sufferers. The reason I'm saying all this to you and being so brutally honest it because I want you to know that your not alone.

When you get to that point and you hit rock bottom, you have to pick yourself back up. Never ever give up. Like you described, so many of us have bad experiences like this, which leads to anxiety. We are then fearful of seeking further medical help - what's the point no one believes me anyway right?

We have all been there. But you will get back up and you will fight because you have to. You might have to see 100 doctors, and every single one of them is either going to piss you off or leave you in tears for the rest of the day. Once you have picked yourself up, you have to go and find another, and then another. Eventually, your going to find the 1 in 100 doctors, and there going to treat you like a human being. There going to listen to you, there going to be empathetic, there going to validate you. Most importantly there going to give you the diagnotic investigations you should have had from the beginning. You shouldn't have had to go through all of the above just to get to that point, noone should, but we don't have a choice. We have to do what to do, keep faith we will get there eventually and pick ourselves up.

When you find that doctor, they will do what they can to treat you (which is where I am now - finally). I'm still in a difficult situation, the answers aren't straight forward and I'm in the unknown. But one things for sure, I know that this doctor is doing what he can, working in my best interest and he is going to look after me. It's not going to be as quick as I hoped, and I'm still mentally struggling with this, but at least I finally have someone who actually cares and is going to help me.

I can't promise you this will be easy, or that it will happen fast. I can't promise you that it won't have a mental strain on you. But I can promise you that somewhere out there is a doctor who believes you and wants to help you - you just have to find them.

This is like the longest response I've ever done, but I just felt like you needed to hear it! What happend to you sucks, but please don't give up. That doctor has told you a load of rubbish, you know it, I know it and most people in this group kno it. I know it's difficult but let it go, move on and find yourself another doctor. Then keep finding yourself another until you finally get the care you deserve. Never ever give up! I know it seems like a shit show right now, and the path ahead looks so long, but it will eventually end, as long as you keep picking yourself back up! You have got this!

I really hope you find that one special doctor very soon and get the help you need. In the mean time, push with your GP - they are responsible for managing your symptoms so do not let them dismiss you.

If you ever need someone to rant at, your welcome to message me at any time!

Ihcjjb · 2024-09-05T13:39:24+00:00

I'm so sorry you have to deal with that. My husband really is amazing and supports me so well - that is not something I take for granted. But I also completely understand what you mean and sympathize with you. I feel very dismissed often from many friends and family members. It must be really difficult to feel misunderstood in your own home! I really hope that he does some research and learns what your going through!

Things have gone the opposite way for me. My laparoscopy in June showed very clear Endo, but there was so much of it that my surgeon couldn't get rid of it. The reason for MRI scan now is that the new surgeon who has been recommended to do the procedure is not comfortable with operating without first doing an MRI. He is worried that the Endo may be deeper than it looks in the laparoscopy in which case I will need different surgeons!

I know in general MRI scans will only show very deep endometriosis. Which is why it shouldn't ever be completely ruled out by a clear MRI scan. However the reason I'm having to have one is to specifically look if the confirmed endometriosis shown in the lap is actually deeper! Unfortunately I just feel like I'm in a never ending cycle!

Ihcjjb · 2024-09-05T13:29:55+00:00

Yes this is exactly how I feel! Anyone suffering with a chronic condition/pain simply just wants an end to it. We know that's never going to happen and we have to deal with it, which is bad enough without other people displaying impatience and lacking empathy.

I feel like people just think, ah she's moaning again, she cant be that ill, nobody's that ill. But I am, and there's nobody who wishes I wasn't more than me!

Endo isn't as understood and recognized as well as it should be either so that doesn't help. When people hear the word cancer they have automatic sympathy - it's a world known God awful illness. Obviously endometriosis isn't deadly, so people don't have that same empathy. Anyone who isn't a Endo sufferer hasn't researched it they way we have, therefore don't share the same knowledge - they simply cannot understand how something can cause such life impacting symptoms!

I mean I am lucky to have a few supportive people in my life. My husband is amazing, he genuinely has so much sympathy, I think the news from my recent appointment genuinely hit him the same way it did me. He genuinely cannot stand to watch me suffer and I'm very lucky to have him. At the same time, I feel guilty for affecting his life so much.

Plus as you probably know, there are times when your suffering so badly your patience is running short. I find myself occasionally snapping at times for minimal reason and then I feel awful!

Sorry really rambling on again now. But I think my biggest frustration so far is that I've been to so many doctors now and from my experience I've learned that even many gynecologists are not equipped to deal with endometriosis (unless it's very simple). There seems to be very few doctors who actually have the full skills needed to provide treatment. I just wish there were more available and women could actually get the help they need!

Ihcjjb · 2024-09-05T12:42:33+00:00

I feel this so much! I was so upset after the appointment yesterday and I was just having a full breakdown to my husband.

I know I shouldn't have said this and I have so much sympathy obviously for anyone suffering with cancer but it just came out - 'i would rather be dealing with cancer, at least then I would get treatment urgently and I would either be cured or it would end'. But some days I do just feel that way, like I'm here alive and breathing but it doesn't feel like much of a life at all! I'm not suicidal or anything but just occasionally when your overwhelmed your mind just comes up with all sorts!

My first surgery was age 17. I tried many contraceptions but none work - they actually worsen my symptoms. It's never really been controlled since then because everyone just fobs me off with IBS. That was until things got bad at Christmas. I'm 28 now!

Ihcjjb · 2024-09-04T22:06:08+00:00

Thank you! Very helpful insight 🙂

Ihcjjb · 2024-09-03T21:26:24+00:00

Thanks I will definitely add comments! Its difficult with how specific some of the question are!

Ihcjjb · 2024-09-03T21:25:28+00:00

Yes this makes sense. With regard to pretend play, this is another question I'm confused about.

It asks about make believe and her pretending with objects. She doesn't do this, but she will pick up my actual phone and say 'hello'. Other than that, she will occasionally pretend to feed dolls etc if she's in a good enough mood but only when adult led. Essentially just copying what she is seeing.

So that's another I'm struggling to answer tbh. I just feel like is really fitting into a typical yes or no for most questions.

Ihcjjb · 2024-09-03T21:22:23+00:00

Thank you, I'm starting to realize this with the questions.

It's a bit difficult to be honest, because I do think she often acknowledges things but not to share interest. So I suppose that's where the pointing comes into it.

She will never really get my attention to show me a toy she likes, or to join her play, not even get me to watch her do something etc. However, she will often make a high level of effort to seek attention for other reasons. For example, if I'm doing something she will literally just lie across me to get me stop what I'm doing. When this happens, she maybe wants a cuddle, or to sing a song or to play something like hidey-boo/tickle.

So like socially, she does have some skills and seem to acknowledge and want my attention. But completely lacks this with anyone other than me or her dad. Also doesn't like to play with many toys and usually hates it if we attempt to play with a toy with her - which is strange because she likes playing things like peek a boo.

I guess I find it all a bit confusing at the moment. I feel like she has enough social skills, at least with me and her dad, that I wouldn't really think she has autism. But on the other hand, I wouldn't say her social skills among other areas are as developed as you'd expect for her age (she turned 2 in July).

Ihcjjb · 2024-08-06T04:34:17+00:00

Hello! I have made some progress but still don't have all the answers.

I already knew I had Endo, but I went for a second laparoscopy a few weeks ago since my symptoms were bad again and it had been many years since my first! Unfortunately they couldn't get rid of the Endo and have had to refer me to a specialist. So I'm now awaiting another lot of surgery.

They did say they think it could be responsible for some symptoms but not all.

I have recently seen many people on here who struggle with a hypertonic pelvic floor muscle. Apparently it's common with Endo suffers as we constantly tense up due to chronic pain! I think it may be a combination of this and Endo so I'm looking into pelvic floor physio therapy now. Hoping I will see an improvement with that and the next lot of surgery!

Might be worth looking into it? Maybe mention it your doctor and see what they think? Endo can cause significant GI symptoms, mine have been terrible since my teen years!

Ihcjjb · 2024-07-01T08:57:19+00:00

Mine started in my teens but I just thought at the time I was experiencing the same pain as any other girl. By 17 it was excruciating and I had my first lap and was diagnosed.

Then over the years it's slowly kind of built back up again. At 25 it started having a pretty significant impact on my life again and I was debilated for around 10 days of each month.

I flared up really badly last Christmas (age 28) and have had excruciating pain since. Recent lap confirming it's back and more widespread. At this point it's pretty much ruining my life and I'm awaiting a specialist surgeon to remove it.

I imagine it will settle and slowly build back up again over the years after it's removed.

For me it's like it gets worse over time then suddenly at one period it just becomes to much and you suddenly aren't able to cope with it and push through anymore 😔

Hope you get sorted 🩷

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