Have any of you had a temporary ileostomy which has relieved your pelvic pain?

[Lovetocycle76]

Hi,

I get terrible pelvic pain after pooping which radiates to my genital and pubic region and other areas including being felt deep in the rectum. I've been wondering if my quality of life would be improved by having a temporary ileostomy to give my bowels some healing time as all my pain seems triggered by going to the toilet and yet I'm none the wiser as to what is causing the problems, whether it be nerves that are red raw or muscles. One thing's for sure: something down there is not working as it should and I'm just wondering if any of you have had an ileostomy which has actually improved your quality of life and reduced your pain and suffering? I'm seeing a gastroenterologist soon and will be asking the question but I just wanted to do some research and get some feedback from those in the know. My best wishes to you all. Seeking answers to such complex problems is so taxing but I will never give up trying for myself and my family. I just want to be able to enjoy life again. God bless you all. Thank you.

[Alaine1 Administrator]

Hi,

Usually they will only do this if the bowel is diseased say by crohns or colitis. They do do it for other conditions which have spread to the bowel say endometriosis but it has to be severe not just a few patches. Fortunately many with bowel endometriosis don’t have to have this procedure done. It would be down to your gastroenterologist but for this to be agreed would need several hoops having to jumped. The first step for any type of surgery like this would be an MDT meeting (those with IBD probably would have already had this conversation and it agreed. The team as a whole would need to be convinced this was a good idea. To be honest I think you’d face a big challenge at this stage. The next step would be that you understood all of the risks including it not helping you at all. They can actually get you to speak with a psychologist. I’m not convinced anyone would agree to it as unless your bowel was damaged beyond repair or has a disease and bowel rest was needed then you might stand a chance but I suspect you will need to have tried other treatments first. I know first hand how difficult it is to get major surgery. I’m down to have my bladder removed and reconstructed from part of my bowel after failing all other treatments and suffering severe pain and other symptoms. Trust me it’s a long process and to be considered for any major surgery the hurdles are extremely high to jump. You’d probably need imaging tests that you hadn’t already had as not all tests can be ordered by GPs. I know it sounds disappointing to hear but I think you need to be realistic about your gastro team agreeing to your request

[Lovetocycle76 in reply to Alaine1]

Hi Alaine. I thought as much. It's horrible to think that we are expected to just suffer and nothing can or will be done for us but I know you are just being realistic. Thanks for the reply.

[Alaine1 Administrator in reply to Lovetocycle76]

It might be worth asking though as some doctors will think outside the box. It’s still possible that they might be able to help you but I don’t think it will be a quick fix. Surgery might be an option but it might be classed as minor surgery rather than major surgery. Or it might be a combination of treatment methods. Don’t give up hope until you’ve been seen. Although some doctors don’t like difficult cases many absolutely love them as it gives them a challenge. From my own experience of other causes of my pelvic pain it pays to work with the doctors and be open to all treatment options rather than saying no. It might be retrying some medications again but taken in a different way with lifestyle changes. Think of your pelvic pain like an onion. An onion has many different layers and pelvic pain is rarely one disorder. So someone with endometriosis may suffer from IC and adenomyosis (me!) so each of these needs a different plan. It might not be immediately obvious that there are a few causes of pelvic pain in one person. Be open and ask what else could be causing your pelvic pain if he disagrees with your own interpretation. I know it’s easy to hold onto our own beliefs but sometimes this doesn’t help

[kalecolbe12]

I've asked the same question myself and I feel it should be an available option ...I think it will be in the future for a better quality of life..the only issue is that it may still not stop spasming of the levator muscles which cause the pain but I'm the same I get pain after bowel movements a lot of the time but not as bad as it used to be where I got pain for hours and hours and hours.. I have been on cyclobenzaprine muscle relaxer low dose and gabapentin 300 mg low dose at night and these medications seem to have calmed everything down somewhat,along with pelvic floor PT and diaphragmic breathing and stretches... I also have suppositories which help a little but not so much...one of the girls who used to be on here or maybe she was on the pelvic floor dysfunction group is had an ileostomy because she had gastroparesis with the bowel movement got stuck which caused a lot of pain going on the last part of the rectum to the anal canal...anyway she liked the ileostomy so much better that she got a permanent colostomy because she would be sitting on the toilet for hours and hours and after 5 years her doctor's suggested it so as you can see it took time but she did get it and was really happy with it.If bowel movements cause a lot of pain then it should be offered to us I'm beginning to think that I would do it now... Can you tell me how long you had it and what you think is causing it also what tests are meds you've done?Also let's stay in touch since we have the same thing?

[Lovetocycle76 in reply to kalecolbe12]

Hi, sorry you are suffering so much too. I've had this since 2002 and have seen various PT's and travelled to a chronic pelvic pain specialist in Bulgaria in 2003 for nerve/spinal jabs. These seemed to help and I managed ok for about 15 years with it waxing and waning. I had good days and bad days and it was better then than it is now. Something changed in 2018 after what I think was some sort of infection. For a couple of days I had bad pain up both sides and all around the pelvic region and lower back and it was after this episode that my symptoms not only changed but became a lot more intense and having bowel movements have always left my pelvic region feeling heavy, sore and very uncomfortable and I still don't really know why. Doctors have palmed it off in the past as IBS which usually is code for they don't know. Yes, it can be quite convenient for them, IBS! I've never been given a lot by way of medication. They've always tried to suggest anti-depressants to which I've refused as it's not treating the source of the problem but trying to paper over the cracks, almost like they are saying it's all in your head. I even had one Doctor suggest that and when you leave after constantly battling them to be taken seriously, you feel like banging your head against a brick wall and crying. This condition has put me in some very dark places but thus far I keep fighting back and will continue to do so. I'm not going to let it beat me but I know how lonely and depressing this road is for you. All we want to see is a sliver of light at the end of the tunnel but so far we are still driving through the tunnel in the dark with the brakes on. I'm hoping that one day there will be a breakthrough for chronic pelvic pain sufferers and that something will come to light that helps enormously but until that time we battle on. There does need to be more research put into the likes of this if you ask me. It's a very neglected issue and seeing as it affects so many people and hinders quality of life to the extent it does you would think more resources would be allocated to it. Regarding tests, I've had the usual round of colonoscopy, abdominal/pelvic/bladder ultrasound scans which have never revealed anything. They say everything looks normal but I'm hoping to have some different investigative diagnostic tests soon like defecography or perhaps a nerve MRN MRI. I'll keep you posted. What's the latest with your situation? My best wishes to you.

[kalecolbe12 in reply to Lovetocycle76]

I manage ok with a small dose of cyclobenzaprine muscle relaxer and a 300 mg gabapentin for the nerve at night and sometimes after a bowel movement I have pressure and pain and other times I'm okay just a little irritation and then other times I don't have anything just normal so I can't figure out I just know the last few days I've had a significant amount of pressure which is horrible feeling but the doctor said that's the spasming I've been in the air and a half of pelvic floor PT which really helped me emotionally and physically but then I started flaring afterwards sometimes and I didn't want to continue with that.. mine is all rectal for the most part so I'm thankful for that because some people have pressure and pain all over the pelvic floor with urinary problems and vaginal uterus problems. I got a sitz bath so I can sometimes do that after a bowel movement and that helps and I also have suppositories made from Valium and lidocaine which can work but irritate me and another thing I have which I think really works is just a $2 tube of vagicane from Walmart that I can put inside. I haven't tried Botox yet because it's so hit and miss it works really well for some people and not well for others and makes things worse sometimes and yet and there's an intestim which a lot of people say works and the pain pump... I can manage it okay for the most part so I'm not doing anything to invasive which I think could make it worse.and the important thing I'm trying right now is I'm going to do some Tai chi and I'm also doing the pathways chronic pain app which is a free download. Because as I'm sure you know we need to calm our nervous systems down

[Lovetocycle76 in reply to kalecolbe12]

Absolutely. Can you let me know how you get on with the app and Tai Chi please as I've thought about trying it before and often heard it said that it is great for the mind and your blood pressure. Keeping it together mentally with this affliction is one of the hardest things because it really grinds you down day after day, hour after hour. I have developed chronic insomnia now which I'm sure has become psychological due to the pain and suffering leading to rises in anxiety and stress levels. This then increases cortisol levels and it becomes a vicious circle which is really hard to get out of. Obviously we need good sleep to repair our bodies and keep our hormones intact but lately I've become exhausted through lack of sleep and it makes everything harder to face. I've been left feeling very sad and sorrowful of late. I'm praying that we can all find a solution to our problems. Keep in touch and anytime you'd like to talk I'm always here. Take care.

[kalecolbe12 in reply to Lovetocycle76]

Me too...anytime... Can you message me so I know who you are? No worries if you don't want to... thanks

[Karen1954]

Hi!!!! I’ve wondered the same thing!!! My pain doc thinks my nerves r on overload and firing all the time!!!! I’ve tried EVERYTHING!!!!!! My rectum shows no tissue damage at all which I think is crazy but pain doc said that can happen!!!! I burn and have pressure immediately after getting out of bed and feel like I have to poo all the time!!! My new and fifth colo doctor suggested botox but this is not covered under Medicare unless u have a fissure which I have had so it’s like $3,000 out of pocket as he wants to do this under light anesthesia!!! Can’t do that!!! So now my next option is a different nerve stimulator or the ileostomy which my colo suggested!!!! I hope u get some answers and if u do could u please share those with me!!! This is awful as I have the same symptoms!!!!! Been going on six years!!!!!! I’m desperate!!!!! Hope we can talk soon!!! I’m here if u need to talk!!!!

[kalecolbe12 in reply to Karen1954]

Hi Karen I've spoken to you quite a few times but my messages are in my old phone but I wanted to say I'm having pressure a lot right now although I was fine for a month so I'm back on the muscle relaxers which kind of relaxed the spasm because it's all spasmodic constantly... Did your doctor say it's caused because of bowel movements because that seems to trigger mine?which were thinking is if we get any ostomy then it won't have to pass through the rectum which will stop the pain but I'm wondering if it will still spasm if you get any ostomy did your doctor say anything about that? I didn't know if you were taking muscle relaxers I know you've tried everything except the botox which I'm thinking of now too but if you do consider the ileostomy and get it done would you please contact me by messaging and let me know?? thanks,Audrey

[Karen1954 in reply to kalecolbe12]

Hi KaleColbe! So nice to hear from u!!! I did try botox back in 2017 and it didn’t work. I just saw my uro-gynecologist for trigger point injections. I asked him about doing the botox in the rectum and he said the botox is just like my steroidal trigger point injections except he does them through the vagina and colo would be doing it in the rectum. I can’t pay the $3,000 since Medicare won’t approve botox for the pelvic floor!!! My burning happens as soon as I get up in the morning along with so much pressure!! It happens after every bowel movement no matter how big or small. My pain doc says my nerves r going crazy and uro says the burning is from too tight of muscles. Wants me to use therawand twice a day and go feel. He pushed hard today and it killed me!!! The burning is excruciating!!! Nothing works!! I’ve tried gabapentin and amitriptyline with no luck. My muscle relaxers don’t do much either!!! I just want to be somewhat normal!!!! These years aren’t golden!!! It’s been awful day in and day out. I don’t see any light at the end of the tunnel!!! Very depressing and sad!!!! I can’t enjoy life at all. It’s hard when u have chronic pain!!! U know that!!! What’s going on with u? Oh. Yes my colo mentioned the ileostomy to give my ass a break but trying not to go that way. Please keep in touch!!!

[kalecolbe12 in reply to Karen1954]

I am okay sometimes I'm fairly normal with my meds but I just started having pain after the bowel movement again ugh.. so back to the meds .... was doing a little better with the pathways chronic pain app..

[Karen1954 in reply to kalecolbe12]

I’m glad to hear u have been doing better!!! I haven’t had a break in months!!!! Not one!!! Like I said my meds don’t work much except for my pain pills. Had to go back on!!!! Does the past heats chronic pain help? I’m hoping to try another nerve stimulator!!! If that doesn’t work my last hope is an intrathecal pain pump. Don’t really want!!! I just don’t want to poop ever!!! Lol. The shit we have to go through is awful!!! This isn’t what I planned for my life and I know u didn’t either!!! Keep me posted on how u r doing!!! Something has to work for us!!! Please keep in touch and I will do the same!!!

[kalecolbe12 in reply to Karen1954]

How does the intrathecal pain pump work? Yes let's stay in touch we need support 💗

[Karen1954 in reply to kalecolbe12]

Hi!!! It’s placed near or in the spinal column and it pumps pain medicine as needed. The next thing is a dorsal root ganglion nerve stimulator. I tried a different one but had zero results!!! I’m on my last leg of things to try!!! Yes we DO need support !!! Most people don’t understand our chronic pelvic pain!!! I’m sorry but it IS the worst!!! Who wants butt pain all the time!! Sometimes like quite a lot I have to push through pain to be able to go out and believe me I don’t go out much!! Can’t exercise cuz it burns!!! This is no way to live!!! Does the chronic pain app help?

[Lovetocycle76 in reply to Karen1954]

Thanks Karen. I'm so sorry to hear of your suffering. It's compounded by the fact that we never seem to get an answer to what is going on. I envy those who know what their problem is as at least if you know what's causing something you can take steps to treat it! So, as far as you are aware there is no tissue or nerve damage? That's the thing that gets me. It's crazy that we are all suffering like this yet no damage shows up on scans. I struggle to comprehend this. You would think pain and suffering would reveal itself right? It's horrible, and I truly empathise with the shit you are going through. Hang in there. At least here we all have each other and can share our experiences and support each other thanks to the fantastic unpaid work that volunteers like Alaine put in. I appreciate support boards like these and they are important for lifting morale when you are at a low ebb, knowing that you are not going through this alone and that there are others you can talk to. I think in your case, your rectum could really benefit from a rest. How can your insides possibly heal when they are getting ripped and torn constantly when going to the toilet and inflammation cannot die down? It's a no brainer. I understand what Alaine has said and that ileostomy must be a last resort after exhausting all other options but I do feel it could benefit some people too, but it does come with risks too. It's really hard to know what to do for the best but never give up trying to find answers and a solution. What triggered your problems may I ask?

[Karen1954 in reply to Lovetocycle76]

Hi!!! It was SO nice to hear from u!!! This whole pelvic floor problem is a pain in the ass!!!! Lol. I finally was diagnosed with out of control nerves in my rectum!!!! Have had every test and scan and tried SO many supplements and treatments there is with nothing helping!!! I’m doing another nerve stimulator on December 9! The first one didn’t work!!! My gynecologist said that the burning is from nerves being trapped by muscles and I was diagnosed with non relaxing pelvic floor so he told me use the wand twice a day for at least 10 minutes!!! That’ll help break down the muscles!!! This started in 2015 when my pcp did a check with an anuscope and I felt a pop and from that time on my spasms started and have continued!!!! I’ve tried so many meds and pain pills and acupuncture and mayofascial treatment! Nothing works!!! I’m SO frustrated cuz I don’t have a life!!! Can’t go and do or exercise or see my grandkids for long periods of time cuz I hurt!!!! I have to push through pain to live!!! I’m in tears every single day!!!! I don’t know why I’m experiencing this!!!! Is this my life? Sorry to go on. What experiences have u had and what treatments have u tried? In total I have see 7 GI and 5 colorectal and numerous therapists and pills and tests and scans and treatments!!! I’m about finished with trying whatever is out there!!!! We all need support that is for sure!!! I’ve talked to quite a few on this website! Been a godsend cuz most people don’t understand!!!!! Butt pain is the worst!!!!!! Nothing compares!!!! I have back and neck problems too but doesn’t compare!!!! Keep me posted on what has worked and not worked for u and just to keep in touch!!! I’m looking forward to talking to u again!!! It’s nice to have support from people that get it!!!

[Lovetocycle76 in reply to Karen1954]

Hi Karen, I hope you are having a better day today. I'm not unfortunately. I'm just really down in the dumps in pain and suffering, unable to sleep and very anxious. I totally understand having constant rectal pain. Mine has been bad today and is felt through to the perineum and genital area. I long for some relief. I've seen a few different doctors including GI docs and Urologists but I've never had any sort of success if I'm honest although when it first started I travelled to Bulgaria to try some nerve block jabs. I feel so sore inside and it's like the inflammation and pain has really upped the ante on me. It's crushing it really is. Sometimes all I can do is lie down shaking with anxiety and gritting my teeth. I need to try some muscle relaxers or something like gabapentin I think to take the edge off it and help me sleep. My rectum was burning and stomach churning earlier and insides felt really gnarly. I had to get to a toilet to do a big poop and once again I'm suffering again. It's horrible. I've been getting some dark thoughts because of this and I have to snap myself out of it. I don't want to give up and become a statistic. I have a family who needme and need me to get better. Trouble is, I don't know if that is ever going to happen. I've had this since September, 2002 but the 2 and three quarter years have been the worst and the last 3 months the worst and most sustained period I can remember. I see another specialist on the 30th and I'm hoping for some more in depth investigation that can shine a light on my sorry life. What about you? Have you found anything that helps your pain or tones down the pain after pooping. Anything you can recommend to eat or drink that helps? God bless you. It's a pleasure to speak with you. Drop me a message anytime if you want to chat.

[Karen1954 in reply to Lovetocycle76]

I’m SO sorry to hear about your pain! I definitely get it!!! I can’t believe u have had this shit for 18 years!!! Good god!!!!!! I thought 6 years was bad!!!!! How have u dealt with it? I’ve tried muscle relaxers and gabapentin and SO many other drugs and supplements!!!! It’s insane!!!!! I totally understand!!!!! Sometimes my pain goes to the perineum and vaginal area and it BURNS!!!!! I understand the “thoughts”!!!!! I have had them too!!! I think many of us have!!! I know it’s hard to keep pushing through life and relationships!!!! I want to be with my grandkids and have fun!!! I don’t know what fun is!!!! I see commercials for fun family things and I can’t do any!!!! This isn’t fair!!!! I also have ibs which has been a struggle but have found a balance but still have the burning and pain!!!! Why?!!!!! I can’t begin to tell u what I’ve tried and how much money I’ve spent!!!! It’s beyond!!!!! What kind of specialist r u seeing on the 30th? My colo wants to do botox into the rectum but I can’t afford to do it not knowing if it will work!!!! So my pain doc is going ahead with the DRG stimulator on December 9! We will see. I keep hoping and praying and just want to make it through!!! How can we live like this? I wish I could wave a magic wand for all of us sufferers!!! It’s beyond comprehension!!!!! I wish u nothing but happiness and a way to get through!!! Please keep sharing with me cuz I will be here!!! I’m sure my couple of friends r tired of hearing about this!!! It’s just getting old!!! Take care my new found friend!! Talk to u soon!!!

[Lovetocycle76 in reply to Karen1954]

Thank you Karen. Same to you. I hope you can get through this. I guess we have to. We don't have any choice. It's sink or swim. I'm sinking at the minute. I think I may have major depressive disorder as I am unable to sleep yet feel absolutely exhausted. I've looked at the symptoms and they closely mimic mine. I think it has been triggered by my constant pelvic/bowel pain and discomfort. It's just awful. I wish nothing but happiness for everyone who is going through these issues. I'm feeling an overwhelming sadness that I can't describe. I just sent my 11 year old daughter a WhatsApp message telling her how proud I am of her and how much I love her. These should be the happiest days of my life yet they are the saddest. It welled me up to be honest. God bless you all.

[Karen1954 in reply to Lovetocycle76]

I am SO very sorry u t going through all this!!! I absolutely get it cuz I’m right there with u!!! I’m sure u R depressed!!! U might want to talk to your doctor to try an antidepressant!!! It has helped me but it’s NOT gone by any means!!! It will help u sleep!!! I wanted off my sleeping pills!!! Sleep is the only time I don’t have burning or pain!!!! My uro gyne said burning is from too tight of muscles not letting the nerves relax!!!! Well I’m SO tired of the burning and pain!!! I am depressed every day like u and I cry a lot!!!! I was lucky in that this happened when I was older as I couldn’t have done anything with my kids!!! It would have devastated me as I’m sure u r going through that now!! I think exactly like u!!!! U want the people u know how much u love them cuz your pain is SO overwhelming!!! We just never know!!!! What keeps me going is my daughter and son and grandkids but sometimes that’s even hard to be honest!!! My heart aches with u!!!! How did your pain and problems start? It’s NOT fair we have to live with this shit!!!! I read that levator problems happen to older women like myself but have heard from SO many people young and old how it has affected their lives!!! It’s debilitating!!!! I’m going through the stage where I feel like I have to poo so go in and strain and push and the burning and pain is WORSE!!!! It hurts SO much!!!! I would love to get up and go do something but I can’t without burning and pain!!! I’m like u I can’t take this anymore but we do but sometimes I just want to give up!!!! I hope u have a family that supports u!!!! Even they don’t always understand what we r feeling!!! Only people like us can understand!!!! My therapist will say we’ll go and do or grab my grandkids but that’s easier said than done!!! I’m SICK of pushing through pain!!!! It’s taken my intimacy with my husband away too!!! Thank god my husband has stuck by my side throughout this shit!!!! It’s just unthinkable what we go through!!!! I wish I could take your pain away but unfortunately I can’t!!! I keep asking god to help all of us but haven’t seen any results or answers!!!! I DONT understand!!!!! Please feel free to contact me anytime u need someone to talk to!!! I’m here for u always!!!! If u ever feel like speaking on the phone I would be open to doing that!!! Good luck with your GI!!! My last one and fifth one has been great!!! Don’t let anyone say it’s in your head!!! My first one did and he was full of shit!!! It’s in my ass u moron!!! It’s real and it hurts!!! Have u seen a colorectal? Have u gotten a diagnosis? Please keep me posted!!!! I’m here always cuz it’s a lonely disease!!!!!!! Hugs!!!!

[Lovetocycle76 in reply to Karen1954]

I meant to say it's a gastroenterologist I'm seeing on the 30th.

[Alaine1 Administrator in reply to Lovetocycle76]

Ah thank you! Just to mention a firm diagnosis doesn’t mean that treatment will necessarily work. There are many examples of illnesses where some patients fail to respond to any treatment or the treatment works some of the time eg asthma. I’m just wondering lovetocycle76 have they ever taken biopsies from your bowel or rectum? If there is inflammation at the microscopic level then it might help direct treatment. But and it’s a big but you’d need to convince your specialist plus potentially be prepared for a flare up in pain on top of your existing pain. Of course if you have it done and nothing is found you will have potentially had the procedure for nothing. It might be worth mentioning though?

[Lovetocycle76 in reply to Alaine1]

Thanks for that Alaine. I shall write that down and make it one of the questions I ask the consultant on the 30th. Is it a widely used procedure and what are the potential pitfalls please?

[Alaine1 Administrator in reply to Lovetocycle76]

Taking biopsies are quite routine in many specialties but in your case where the inflammation might not be obvious there is the potential to miss the inflammation. So that’s a risk but I think the biggest risk is a greater level of pain after the procedure that might last a long time. You could always ask about Ulcerative proctitis. but I don’t think some of the symptoms fit but it might be a suggestion in terms of treatment and asking if some of those treatments are tried. Because it would be classed as off licence prescribing if you didn’t have Ulcerative proctitis.your doctor would need to be convinced the benefits outweigh the risks. Some treatments might be a complete no whilst others they might be more comfortable with. Many of the treatments are topical in nature rather than tablets so might be worth having a look. I’m not saying you definitely have this but some of the treatments especially the topical ones I’d be interested in if I were in your position. But you need a doctor to agree your pain is inflammatory in nature and not nerve related

[Lovetocycle76 in reply to Alaine1]

Interesting. I hope the next round of investigations can decipher if I have inflammation or nerve damage. I've always thought it strange that inflammation does not show up on routine scans. One other thing I wanted to ask was, do you think incomplete bowel emptying could cause rectal and pelvic pain along with excess gas. I do seem to produce way too much gas. I've noticed in the swimming pool in the past there always seems to be lots of bubbles rising to the surface from my gut. I don't know whether that can cause pelvic pain but it's just an oddity that I've noticed along with flatulence.

[Alaine1 Administrator in reply to Lovetocycle76]

Excess can can cause pain but from my own experience it tends to feel like a sharp pain. Inflammation can show up on some imaging but that tends to be where a lot of inflammation is present. It’s likely that in the future we will be able to identify all types of inflammation but some people may have inflammation but feel no pain from it. This is sometimes seen in endometriosis where the women doesn’t present with pain but with fertility problems, obviously pain and fertility problems can occur at the same time but it’s an oddity. There are still lots of things we simply don’t know about the human body and illness, COVID has shown that but it’s also shown how a global effort can translate into big gains. Don’t give up hope!

[Alaine1 Administrator]

I’m sorry to hear you are all suffering. Gastroparesis which my sister had as a diabetic complication is a very variable condition. An ileostomy isn’t with risk and future surgery so it’s not an easy route by any means. Some people will have various different surgeries and feeding regimens others will be managed medically and have hospital stays. There are a lot of complications that can occur if it’s not managed properly which is why it’s taken so seriously including malnutrition. Unfortunately my sister was unlucky and died as a result of various complications related to diabetes about 6 years ago. It maybe possible in the future to offer various surgical options to patients in your situations but I suspect they will be relatively minor in comparison and predominately managed by better medications and lifestyle changes.

[Lovetocycle76 in reply to Alaine1]

Thank you very much for all the useful information. I really appreciate your help by the way.

[Godsgurl]

I can relate to rectal pain. I just hit my one year anniversary of having complex Tarlov cyst surgery with Dr. Feigenbaum, the leading TC expert, in Dallas. He treated large six cysts, which are nerve roots filled with spinal fluid that cannot escape, from S1 to S4 in my sacrum. The largest at S2 was over 3 cm which had eroded the sacral bone which was transparent with holes in places. I was bedridden and debilitated with pain for over a year with severe rectal pain and pressure. I have definitely improved since the surgery but still take opioids to deal with the rectal and perianal pain. Especially feel discomfort when the stool is in the lower part of the rectum and after a poop; Still unable to sit for more than 20 minutes. I won't know conclusively the results of the surgery for at least 2-3 years because of how slow the nerves heal and how long they were compressed by the cysts. I had a MRN prior to surgery which also showed pudendal nerve entrapment in the ischial spine in addition to the TC's. I don't qualify for a DRG and would consider a Nevro stimulator if down the road I needed it. Has anyone gotten any rectal pain relief with a stim? Most seem to deal with primarily the legs and back.

[Lovetocycle76 in reply to Godsgurl]

Hi, what scan did you have to diagnose you and how much did it set you back if you don't mind me asking? What is the pain like after you poop and does it radiate and be felt in the genital/pubic bone area after a bowel movement? What have you found helps it? Wishing you every success in your treatment. Let us know if you find any relief with a stim. Take care.

[Marie61 in reply to Godsgurl]

Hello, I was reading your post on the forum when searching for answers to my pain issues. Your pain issues sound so much like mine. I started with pelvic pain a year ago which has gotten progressively worse. I feel constant pain and pressure in my rectum literally as soon as I get in the shower and the warm water touches my buttocks/coccyx it starts. I cannot sit or bend and standing is difficult because of the rectal pressure. I am in agony most days and searching for answers. The pain is all on my RHS and radiates to my buttock and hip now. I have had the usual colonoscopy and anal manometry but nothing was found other than PFD anď suspected Pudental neuralgia. Next step is an MRI of my sacrum, which could take weeks under the NHS. Is there anything that you advise for this rectal pain and pressure as it is my worst symptom and lasts all day.I hope that you are improving now and on the mend?

[Godsgurl]

My rectal pain is pretty localized but can move around to the perineum. I used to get buttock nerve pain and low pelvic pain sometimes. I've had every test I knew to get. Pelvic MRIs diagnosed the cysts in 2015. The MRN which is an MRI of the nerves was out of pocket. The initial consultation fee with Dr. Filler is $575.00 the fee for MR Neurography is

$2500.00 at the Institute of Nerve Medicine in Los Angeles area. Dr. Filler helped develop the technology in France years ago. The most detailed report I have ever gotten. I had sacral dermatome testing in the lower extremities which was abnormal and showed pathology outside the pudendal nerve

. Bulbocavernosus reflex latency testing was abnormal - this is consistent with neurologic pathology within the pathway of the bulbocavernosus reflex both with Dr. Goldstein at San Diego Sexual Medicine. Cost out of pocket another $1600. Just some of what I had. I also had to have a selective S2 nerve diagnostic block which was paid by insurance. I tried everything - pelvic PT, PN blocks, to include pelvic Botox with Dr. Hibner in Phoenix. I can't even consider a stim until I give it a couple years to see my outcome.

[Lovetocycle76 in reply to Godsgurl]

It sounds like you've spent a small fortune but it's so worth it to know what's going on down there. I hope you find lasting relief. It's a real challenge isn't it! Just so difficult seeking help and not knowing what to try for the best. I wish you well. Let us know if the stim works for you. Take care.

[Godsgurl]

One other thing I forgot to mention. I was diagnosed with EDS, a connective tissue disease and adhesive arachnoiditis by a doctor two months before my surgery. I don't know about the AA but believe the connective tissue disorder is legitimate because Tarlov cysts are related. It's an issue making collagen in your body. I immediately started getting Toradol shots twice weekly to cut down neuroinflammation and pain. Highly recommend. I am still getting those shots today plus methylated B12 injections. I also have MTHFR genetic issues.