Severe Pain

[Breathless1943]

Hi All,I may seem new on here,but I’m not. I used to go under the name Gemini/ Norma. But I haven’t been on here in a while,I hope all the folks I used to chat with have now resolved there problems 🙄.

Anyway I’m back,and no further on than before. In fact I would say I’m worse.

From the moment I get up to sleeping again I’m in pain. During the day being up and down it’s bearable,but if I sit like you do at night watching TV,I feel like I’m in labour. And my Colon is soo irate. I just don’t know what to do with myself. I’ve had this going on 11/12 yrs now,but it’s definitely got worse. Now I’ve asked this question before, but I’m going to ask again. My pain specialist wants to give me a Ganglin par block, I had one once to no affect,but he insists you need two. Now I’m unsure what to do.

So has anyone had this and it’s worked even if just for a few months. I would be so grateful for any help/opinions/or suggestions. Thank you.

[kalecolbe12]

I am wondering if you have a neurological thing going on .... I don't know about those blocks and no one else has answered your question yet but I guess it's worth another try and then if it doesn't work then at least you know ....a lot of people here are trying gabapentin amitriptyline and the newest one is cymbalta... Of course Lyrica helps with nerve issues too....and of course quite a few people are trying Botox in the pelvic floor so just throwing out a few suggestions there.... I'm not really clear on where your pain is ...I have pelvic floor dysfunction and I was in the emergency room a couple of times with it but it is muscular and nerve related so I'm going to a pelvic floor PT and I'm on muscle relaxers which have helped all a lot I'm not in the emergency room type pain anymore but I get a flare up here and there and about 50% better now.... I'm thinking about trying Botox if after my time at the PT is up I'm still not better and I'm going to try some other meds to just to see but I hope you get some answers from other people too.... my name is Audrey and you you're welcome to email me for support [e-mail]...I am trying to help as many other people as I can and to get the word out to the general population about these conditions which a lot of people don't know about ...it's so frustrating for family members and friends to try to understand this and how we feel....and thank goodness for this site and other ones like it that they help us all connect

[Breathless1943 in reply to kalecolbe12]

Thank you for your reply. I have been taking Pregablin ( Lycra) for well over 10yrs now,I must say it’s never done nothing for me,but I was told just like all drugs “give it time to get into your system,I’m now hooked on it. My pain specialist said to try these blocks,if they work he will help me withdraw from it. I’m also on another drug Mirtazapine,same thing again,has no effect but stuck with it.

When you say it may be Neurological,your possibly right,I’m going to a stress and anxiety work shop next week. I’ve been to Physio therapy for the pelvic floor ,but after about 2 mths and there was no change,she suggested she couldn’t help me anymore.

Now for the big question what is my problem,well there lies the million dollar question,I can’t seem to pin anyone down to say,but I read a letter from my pain specialist to my GP suggesting Perineal pain,but if I ask him,he avoids answering me. I do know I have some IBS,but that don’t give pain 24/7,it’s flare ups. I’ve spent hours on this site reading other people’s problems,picking up some hints,but I’m at a loss now. I came off here because one of the ladies I got to know who’s day to day life was similar to mine,killed herself,and that really upset me.

[kalecolbe12 in reply to Breathless1943]

Have you tried alternative therapies like acupuncture and hypnotherapy?it really sounds like fibromialgia also....I feel less pain when gluten free ... Although I thought it was just I fad I am finding that it really does help to be careful of that ....luckily I have a fabulous gluten free bakery near my house so I can get their cupcakes and breads and things although now most of the grocery stores here in Phoenix sell gluten-free items and they're really delicious now compared to years ago...I am just trying to throw some ideas out there but I have to tell you I've been with my physical therapist for four months and I am just now starting to turn the corner and she's wonderful she told me that one person took 6 months so I'm surprised yours stopped after 2 months... Yes I can imagine that you can be in so much pain that you feel like ending it but there's always hope and at my worst pain it crossed my mind for a minute and then I just pushed it away and now I'm feeling much better so just keep thinking that way and if you want to talk I am here

[Breathless1943 in reply to kalecolbe12]

Thank you. Yes been there done all that got the tee shirt,as they say. When I lie down in the day,and try meditation,and if I can bring my body right down,the pain slides away,but the minute I realise it’s gone,it’s back again. And I can’t spend my life just doing that anyway. My PT was wonderful I can’t fault her,I was paying private,so she could have made a lot of money out of me,so I seen her as honest.

[Karen1954]

Hi!!! I feel your pain. My days r like yours!!!! From the time I get up to bedtime my rectum burns!!!! I get levator pain!!! I've had ganglion block of impar several times along with an epidural and splanchnic block and rfa!!!! Nothing touches the pain!!! Also had trigger points and Botox. Zip worked!!!! I've done and have seen everyone there is to see!!!!! My pain right now is the extreme burning throughout the entire area!!!! Afraid to poop!!!!!!!!!! What r all your symptoms? This is the most awful problem anyone can have!! I've had it for five years and cannot do anything but sit on a heating pad!!!! What have u tried? If I could have an epidural like when delivering a baby I'd be happy but that can't be done!!! Please stay in touch!!! I'm here for u!!! Take care!!!

[Breathless1943 in reply to Karen1954]

Hi Karen,I’m beginning to think it’s just something we have to live with.🙄. I’ve been like this for around11-12 yrs now,but I do believe it’s getting worse.Trying to just relax and sit and watch TV in an evening is becoming unbearable. I wake in a morning,and seems like my colon starts to move,as the day goes on it becomes erratic. Standing and getting up and down during the day,I cope with. Every time I eat I have a bowel movement and each time it leaves me in more pain. So as the day goes by,after tea,I have a bowel movement and I feel like I’m in labour with triplets,when and if it calms down,I have pain in my pelvic area,under into my virginal area,into my bottom. Now all this pain feels like nerves but really erratic,and I’m positioning myself all over the sofa. I used to use a hot water bottle,but I felt it done no good. I take Diazapan to try to calm my muscles and me down,because I’m usually crying by 9pm. When I go to bed I take a Temazapam to get me to sleep. And I can honestly say,I never wake in the night in pain. Like you I’ve had every test,tried everything out there,and still no joy. But I can’t pin any doctor consultant or my pain specialist down to what my problem is. I believe they don’t know,but how can you treat what you don’t know. I have several health problems more life threatening,but my god nothing compares to this. I dread the evenings when I know the pain will be even worse.

Sorry to rant,but I think we all feel like a rant at times.

[Karen1954 in reply to Breathless1943]

Hi!!! U have described my days almost to a tee!!! So similar!!!! I hate having to poo!!! It always hurts and burns!!!! I'm having a colonoscopy in three weeks and pray it shows something cuz it can't show nothing!!!! The doctors have no clue like u said!!! I did have a fissure but was told it had cleared!!! I take diazepam too and belsomra for sleep!! Nighttime is my only saving grace!!! I can't live like this for the rest of my life!!! I was doing great until I took a new supplement for ibs!!! Biggest mistake of my life!!!! I had sooooo much stool it was crazy!!! Made me raw!!! It's taken me since June to try and feel good!!! I use to workout but can't. Can't enjoy my grandkids either. No one understands this pain!! I have a friend I met on here that has the same thing!!! People understand this if they have it!!!! Others don't!!!! I'm sorry to hear about your other health issues. Me too. I have prolapse of all my pelvic organs!!! Going to have a hysterectomy but the doctor is scheduling in October or November!!!! I can't wait that long!!! I'm like u I do nothing all day but sit!!!! That's not me!!! I'm just sorry we r going through this!!!! I keep praying but gods not answering!!!! I hope u can try and have a good day!!!! I'm sitting here on my heating pad!!! Please take care!!! Happy thoughts r sent your way!!!

[Vicknb in reply to Karen1954]

Hysterectomy is what caused my 24/7 pain. I would advise to think hard about it.

Best to you

[Karen1954 in reply to Vicknb]

Hi Vicki!!! How did they remove yours? Everything has dropped!!! Uterus and rectum and bladder and vagina!!! It's awful!!! I never thought my life would be like this now!!!! It sucks!!!

[Vicknb in reply to Karen1954]

Hi Karen,

Da vinci robot im in hell im doing everything to get out of this awful pain. Blocks help but don’t eliminate I push i spasm in my abdomen i have cramping and a constant ache. I wish i never did it turned my life upside down.

[Breathless1943 in reply to Karen1954]

Karen, I’m no expert,but I tend to agree with Vicknb ,I’ve heard a lot of folk say they thought having a hysterectomy was the answer, then ended up worse. When this first began with me,all them years ago,it was just a mild,I used to tell doctors it was more of an discomfort,well they thought I needed my gall bladder removing then I would feel better, no way that’s when the discomfort turned to pain. I no it’s not such a big op as hysterectomy,but I do now realise ,we need all our bits,if it’s at all possible to keep them. So that was my first mistake. I’ve always thought the medical profession no best,but I’ve now got a different opinion. I take nothing,or do nothing they tell me,unless I do my homework first. If it’s absolutely necessary then go ahead. I think the more we’re messed with the worse we are. That’s just my experience,if I could go back,and no what I know now,I wouldn’t be in this situation.

I believe I’ve got a prolapse,I’m not due to see a coleceral specialist until October,but whatever he suggests I will look into before I go ahead.

You take good care of yourself Karen,oh and I’ve done a lot of praying and so have my friends for me,and God hasn’t answer my prayers either.🙄

[Karen1954 in reply to Breathless1943]

Hi!!! I've been reading everything that has been said and I'm so disheartened!!! I don't need more pain!!! I get up everyday and have immediate pressure on my rectum from all the organs dropping!!! It's awful!!!! Like I said I can't workout or enjoy my grandkids the way I should be able to!!! It just feels good to sit but I'm sick and tired of doing nothing!!!! I've had two doctors tell me I have the prolapses!!! I'm going in for another test today so I will inquire about a lot more things!!! It's so depressing!!! I've already sat here for two months and to think I have another 2-3 months before sx!!!!! Crazy!!!! I'm so confused now!!! I know I can't continue on this road but the other one doesn't look too bright!!! I'm just done!!!! I have done and seen everyone and their mother!!!! U name it I've tried it!!!!! Thank u so much for listening!!! I really do appreciate the feedback!!!! I hope u r doing well!!! Take care and god bless!!!

[Breathless1943 in reply to Karen1954]

I know ,I know,how you feel Karen,all I’m saying to you is do your homework first,then come to your own decision.

I’ve been from one end of the UK to the other trying to find answers,so I know how disillusioned you can feel. Wish I could be of more help. Take care.😥

[Karen1954 in reply to Breathless1943]

Thank u for your kind words!! It really does mean a lot!!! I'm in SO much pain now with the extreme pressure and burning rectum!!!! Sometimes I just want to end it!!! I have nothing to look forward to!!! I can't do anything!!!!! Good god why? I'm a good person who cares SO much and this is what happens!!!! As u can tell I'm down!!! Just when will it end?!!! Thank u for replying!!! It really does help!! Take care!!!

[Breathless1943 in reply to Karen1954]

Karen,my intention was not to make you feel worse. I’m in exactly the same position as you,yes I’ve had many a time I feel like ending it,but think of your family,that keeps me and probably you going.

Look anytime you just want to have a rant,or just chat,I’m here. Now I’m not going to say I would answer you immediately,because even though I don’t go far from home,things do need to be done,and for me being on my feet is the most comfortable,but I also have Emphysema. I’m also having a bad week,feeling low in myself. But please don’t give up,and if I’ve upset you,I’m sooo sorry. I was just using my past experiences.

Have a nice evening if possible,but like you I look forward to my bed. Take care,your precious to your grandkids.💕😘

[Karen1954 in reply to Breathless1943]

Hi!!! Oh no u didn't make me feel bad!!! I just want to be better!! I'm sorry u r feeling low as well!!! I'm so tired of sitting here but that's the only way I feel good!!! Standing and walking out SO much pressure on my rectum it's painful!!! I can't go anywhere or do anything!!! It's a chore to leave the house and I only go for doctor appts. How did this happen to us? I know my family would be sad and mad at me and I wouldn't do that!!! I love my family!!! I wish they'd come and see me!!! I use to watch my granddaughters after school on Wednesdays but can't do that this year for awhile!!! It breaks my heart!!! We use to have so much fun!!! It's going to be a long three months until sx!!! What the hell!!! Thank u for telling me I can rant!! U can too!! U can tell me what your life is like!!! Thank u for your kind words!!! I'm here for u too!!! Take care and can't wait to hear from u!!!

[Sturat in reply to Breathless1943]

Hi Breathless and others on this thread. I see a number of you refer to pain elicited by bowel movements. I know that moving the involved muscles can cause and aggravate pain that can last in some cases weeks and more. In jest this is a real pain in the ass. This natural function can become a world of torture to be feared. After a month of unending pressure and pain it occurred to me that I could not live too long with it at that intensity. All tests showed no reason for it which really made it worse for me. No solution available. We have complicated bodies and doctors don’t fully understand pelvic areas as most of their knowledge in these areas comes from studying cadavers. Anyway what helped me survive is pretty simple. The colorectal surgeon I saw had experience with what he called levator. First he told me “don’t strain!!” Easy to say hard to do. He recommended daily fiber-Fiber One cereal every morning (10grams fiber) bananas -carrots and unifiber supplement with dinner. For me there is no straining . Pooping becomes effortless with very little rebound discomfort. I hope this helps someone. Caution if you increase fiber do it slowly so the body gets used to it.

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