Ginnalee

[Ginnalee]

I'm so glad to be on this group. I've read all your posts and I want to tell you I'm so sorry for those of you still suffering with little help. That is me. We must not give up hope. I'm in the Atlanta area. My nightmare began 8 years ago when I began to experience severe constipation and colon pain also muscles locking up but didn't know anything about that then and neither did my Emory gastro specialists or colon and rectal doctor at Emory! I went through a myriad of tests, (horrible), abdominal hysterectomy I didn't need. Finally 5 years and several doctors later I finally got an IBS, colonic inertia, rectocele, and pelvic floor myofacial spasms. I had Botox injections at Mayo Clinic. Took effect after few weekk helped the spasms for a year. By this time I'd lost a total of 30 lbs. I was only 135 before I got sick. 1 year ago my Rectal issues defecating and colon slow transit made me so desperate I had a colon Rectal doctor here do retecele repair and subtotal colectomy which leaves me 12 in sigmoid colon attached to bowel. I lost more weight recovering, thought I'd die but didn't. I still can eat very little. I'm constipated at bottom of pelvic floor where everything is so prolapsed. Spasms are really bad most days. Right now horrible. I'm sure I need Botox again in levolor muscles and more I'm sure as hips low back everything spasm since surgery. I have Medicare which I understand will not pay for it even for unbearable pain and I had it done in or. before because I had Aetna and it was very expensive. My only hope would be to find a doctor to do it in the office. I might be able to pay for that. It was a urogynocologist before at Mayo. Does anyone know of a doctor near Atlanta who might do this in office? I know it's painful. I'm desperate. I have used Kratom off and on for pain and depression but it doesn't help spasms and FDA is grabbing it. Also my Rectal or vaginal diazepam suppositories don't help after the surgery. Of course no opioids and Ativan helps a little but I've only got a short term prescription for 1/2 of 1 mil a day. Not enough but other muscle relaxers I've used are hyosycamine, librax and another same family can't remember. None help. Gastro recently gave me medical VSL 3 probiotic. Only makes me have terrible stomach cramps.

I pray for help for me and for others who are suffering horrible sicknesses. I pray for help for all of you. Jesus help all your suffering ones.

Yes, guilt is horrible with this too. It's so hard on my husband He's precious and sticks with me through it all I feel so sorry for him. I feel like a horrible wife, mother, grandmother, sister, friend etc Just watch life go by for most part . I'm so sorry for all who have to live this way. I guess you can tell today is not a good day some days I'm a lot more cheerful. I haven't been sleeping lately.

Thanks for listening.

Ginnalee

[Hidden]

Hi,Wow you have been through the mill. I thought I was in a state,but I think you got the short straw over me. I'm sooo sorry for you,and that's all I can do empathise.Im in the UK,so I don't know a lot about your health care system,which I do realise we're quite lucky here.

I to know how it feels for your husband,my husband is in the same situation with me,we haven't had a holiday in over 12yrs. But he's as good as gold,as your hubby must be too. I really hope someone will come up with what your asking for. But you ever want a rant,were all here.

[Ginnalee in reply to Hidden]

Thank you Gemini for your reply. I appreciate your kind words and thoughts. I pray you will completely recover and be well again. You are so kind.

[Angie2020]

Oh my god that's horrific what as happened to you. You poor thing, I'm so sorry you're suffering like this.I don't know what to say to you. You've had a terrible time and still suffering! Sounds like having an hysterectomy causes untold damage and pain but yet they just do it at the drop of a hat! Can you not sue them for medical negligence? Have you tried cbd oil? Im looking into trying it for my anxiety and depression and lower ab pain.I'm hearing only good things about it especially for anxiety, depression and pain and spasm type pain and inflammation.Worth a try and there seems to be no side effects. Your husband is fantastic and loves you to bits by the sounds of things. I know it's really hard on them as well but it's because they feel helpless and don't know how to make us feel better. I wish I could wave a magic wand and cure you. Wish you all the best and keep updating and consider alternative pain relief like cbd oil which is natural, I know I am. All the best to you and your family x

[Hidden in reply to Angie2020]

I've,tried CBD Oil ,and I think for anxiety, it would really help you.

But my choice for anxiety is Diazapam,I know it's not natural,but it's a great muscle relaxer. And don't believe all you hear and read about it,to take as needed,it beats antidepressants which have to be taken daily,then you really do struggle to withdraw from them. But I always think if your in chronic pain on a daily basis,you'll give anything within reason a try.

Good luck to you BOTH.😥

[Ginnalee in reply to Hidden]

Yes I'm planning on getting the CBD oil. Someone said get the spray under tongue and it won't upset gastro. I don't know if a doctor would give me Valium oral. The suppositories don't help after last surgery!! Thank you for the suggestions and someone told me an herbal plant called wild lettuce was good for muscle anxiety, pain and anxiety. It was used on the battlefield in previous wars before narcotics.

Hoping and praying you get better. I'm praying for everyone I read about here. I know this sounds crazy but it does help to know I can share and people get it. Also that you guys don't treat each other like it's in our heads like lots of doctors do.

God bless you

Thank you, Gimini

Ginnalee

[Hidden in reply to Ginnalee]

Oh no I can definitely vouch,that it's not in our heads. Who would want to be on a forum like this,if we weren't unwell. Chat away,with no worries of that.❤️

[anne77 in reply to Hidden]

Are you taking the Diazepam in oral form or suppository form?

[Ginnalee in reply to anne77]

I was given suppositories which helped before my colon surgery now doesn't.

[Hidden in reply to anne77]

Hi Anne,I take the Diazapam oral. As and when I need it,that's the beauty of Diazapam,you can take it as needed,not permanently like antidepressants,and other medications.

[anne77 in reply to Hidden]

Thanks Gemini! What dosage do you take? I am trying to find pain relief during the daytime and still be able to function! I would like to still be able to drive, take care of my grandchildren etc.

[Hidden in reply to anne77]

Well Anne,I started with 5mg,then my Gastroenterologist upped them to 10mg,because he said he believes in Diazapam ,and just to take as I need. Now I can take just two and a half in the day,and still function,then if need be when I'm sitting at night I will either have another half of five,or take a full five. I haven't took 10mg yet,but if need be I would. They affect people differently so you would be better trying half of a 5mg,in the day when your not going out,just to get an idea on how they affect you. Hope that helps you if not I would be happy to help.

[anne77 in reply to Hidden]

Thank you, I will try that!!

[anne77 in reply to Hidden]

Gemini, I also wrote to you about 45 minutes ago (under rectum pain blog) about my MRI Defecography Scan. I hope you got it--might be helpful to know

[Konagirl60]

OMG! You have been a true pain warrior. I am so sad that you had a hysterectomy....why couldn’t they have done a laparoscopy? They could have looked at all your pelvic organs, looked for cysts and endometriosis.

I had treatment in Minnesota but not at the Mayo Clinic. My urologist there said absolutely NO BOTOX for pelvic pain. He said it causes damage to surrounding tissues. Read about it.

I am curious...have you had children? What was your method of birth control before this madness started?

I still use diazepam/ lidocaine Custom compound vaginal suppositories. Perhaps you need the formula changed to have a little more diazepam added? Just a suggestion. Do your suppositories have lidocaine in them?

Sending you positive thoughts and praying you can heal. Your husband is an angel...you know it and do not feel guilty. You are lucky...he IS committed. Enjoy that.

[Ginnalee in reply to Konagirl60]

Thanks Kongagirl for the reply. No my suppositories only were diazepam but since my latest colon surgery they don't help so....Yes I knew of the Botox problem but was so desperate from the spasms I'd do anything. I had 1 daughter natural vaginal. My problem a lot is everything dropped so low but at this point I couldn't go thru another surgery and every surgery affects the muscles/nerves adversely. I'm feelin like my strength is waiting barring a miracle. I'm older and don't need birth control.

God bless you and I hope and pray you get help and without soon and get well.

Thanks

Ginnalee

[Konagirl60]

Ginnalee, I get it. What can be done to strengthen your pelvic floor? Do you have prolapse that bad?