Between the devil and the deep blue sea

Thanks Matron.  My gynie has referred me to who she said was a specialist in prolapses, but I'm concerned that if she's not up in Ehlers Danlos, she's not going to realise the extra risk of failure with that?  But it is interesting to hear that there may be a pessary that does suit me.  I had a Milex ring before but my GP never followed the advice I found out about afterwards, to wash off powder before inserting it, so maybe that was the problem, but she did seem to be worrying about it breaking through the skin.  She had me on three times the recommended dose of Vagifem (oestrogen pessaries) for over a year but then I got the endometrial cancer.  I don't think the Vagifem did anything anyway though.

All doctors should have knowledge of Ehlers Danlos so I wouldn't be too concerned about that. Go with an open mind and see what the consultant suggests.

OK, I'll go with renewed hope, thank you:-)

Thanks Lynne!  I still remember those first steps after the prolapse had been repaired and it was such joy!  But I never expected it to fail so quickly, so it was a bit of a shock.  I went there expecting her to say it was the one that hadn't been repaired and she could do it as a day job and that would be me sorted!  Oh well.... that's life!

Thank you Lynne - I didn't know something like that existed!  That's encouraging!

Your very wlecome Chris. A lot of ladies don't know and my oldest is 92 who is very grateful right now. Everybody seems to forget about the elderly and what they are going through as well with prolapse. Its not just our age and younger. This prolapse is not just a younger persons problem and the age can go anywhere from after childbirth, before childbirth, right up to 100. I am very concerned for those ladies and one came to me to let me know that she was going to have to have her vagina sewed up if it wasn't for me helping her. She is doing very well today and I am so grateful for that. She is 82 has lung problems so she could not have surgery at all. So the doctor suggested sewing her vagina closed. She was horrified and upset. It is understandable, because we are still women with feelings no matter what our age.

                                       Blessings to you Chris

                                       Lynn

Fortunately that surgery is not performed in the UK. It was performed years ago and I can't believe it is still being performed.

Its awful to say Matron, but it is still being offered to elderly women who cannot have surgery. She told me they were going to give her some sort of local so she wouldn't feel herself being sewed up. I cannot imagine what this must be like for the elderly who are still being offered this. Where do they turn if they do not have family or help? How many have gone through with this? I read about one person on the internet who had terrible infection and they had to open her up again. It was quite serious.

                                     Blessings to you

                                     Marilyn

To be honest Lynn, I was considering this option and it wouldn't bother me if it worked BUT they need to get to the vault to check for any recurrence of the cancer.  But I'm concerned that because of the connective tissue problem NO surgery would work that well.

That doesn't sound good!

Chris, I honestly think you have been through enough surgery for anyone to go through. Especially with connective tissue problems. I think youshould just get yourself checked out to confirm there is no cancer first as you say. It also sounds like you have a little rectocele prolapse from behind because maybe from all your straining to go to the bathroom to have a bowel movement. You have to get more fibre in your diet and make your stools soft so you don't have to strain to have a bowel movment. My garment would help you regarding support for your rectocele and any other type of prolapse you have. However, your main priority now is to have things checked out and get yourself on a good diet for those bowel movements so you don't have to push. So hope are okay and all your tests come back clear for you. I will keep you in my prayers.

              Blessings to you

              Lynn

No it doesn't good what that other lady was offered regarding sewing her up. But thank goodness she doesn't have to do that and had another option that I gave her to help her. She is fine now and very content that her prolapse is not hanging out anymore and she can go about her day without worrying anymore. Being 82 she is fragile and her lungs are not the best. She had oxygen when she needs it, but again, at least I could help her with her prolapse and she can now focus on taking care of her lungs and not overdoing things.

                                             Lynn

Thanks Lynne!  Yes, I have a history of constipation (again, probably linked to Ehlers Danlos) and up until last year was taking 5 Senna's a night but then the hospital put me on to Macrogol and Fibergel (one in the morning and one at night) and I've not had a problem since - works really well!  I eat about 7 - 9 portions of veg and fruit a day too.  So far there's no signs of recurrence of the cancer.  They reckon the person themselves is usually the first to know because bleeding from the scar tissue is usually the first sign, so all is well there.  I'm truly not dwelling on the worry about recurrence when I thought I would be!  I feel as though I've put the epidsode behind me really.  Yes, I am so optimistic that a garment would sort it and it may just be that the back one doesn't get any worse so won't need treatment.  Thank you so much for your help!

You have a very positive attitude Chris and thats such a good thing to hear. Thats half the battle of this and other health problems is to have a good positive attitude. You sound like you have a very good diet and I am glad you are on track for that. I have to tell you that when I get sore from my prolapse rubbing a little because of dryness, I stick a pin in a Vitimin E gel capsul and squeeze the liquid all up inside and around the tissue of my prolapse. It is very healing and soothing for the skin inside your vagina area. Just make sure you are not allergic to Vitimin E. You may want to try that to help ease your tissue and help bring some soothing relief. Others on this forum have used it as well and it works for them too. Just make sure you have the natural Vitimin E gel capsuls. If you want a brand name, just let me know and I will message you privately because we are not allowed to say brand names and thats understandable.

                              Blessings to you

                              Lynn

Oh thank you Lynn!  When we were told about the prolapses we were both shocked and I didn't feel positive at all that day, but once I'd googled the options and decided I'd hang in there without surgery for as long as possible, I felt I had a plan, and that always is what makes a difference to me - feeling in control of the situation.  What I've been using for quite a few months now are hyaluronic acid pessaries for menopause and they work pretty well as moisturisers.  Before that I used coconut oil and that was OK, but a bit greasy, whereas these are inserted at night and so they don't leave a real residue.

Okay Chris, whatever works for you works for you and I hope you can cope with all your issues. Again, you have a real positive attitude and that is half the battle. We have to realize that a prolapse is not life threatening, it is life altering. When we can do things that are natural and will help us live our lives as normal as possible we strive to meet the challenge. I have been there and done that too. Not just with prolapse, but I had life saving brain surgery and had to learn how to walk all over again etc. It took me a year to get back my life to as normal as possible. I try to find all the alternatives to avoid surgery when it comes to my prolapse. So far, I am winning the battle and I hope you do too. You have been through enough surguries and you have surely come out the other side a very strong person. Way to go Chris.

                            Blessings to you

                            Lynn

Lynne, that is so kind of you, thank you!  I'm sorry to hear about your brain op - that sounds a tough one!  To be honest, the surgery wasn't that big a deal.  It was done laparoscopally, and the bladder infection after was probably what knocked me for six rather than the hysterectomy and prolapse repair.  When someone asked me if I was nervous about the surgery my reply was 'no - I'll be asleep - that's not my problem' LOL!  The very worst bit was being told I had cancer and having to wait about 6 weeks for the op - they were my darkest ever days, but as soon as it was done there was huge relief.  So yes, getting the prolapses into perspective - these won't kill me and you've shown me that there are options I didn't know I had.  I'm not afraid of surgery, but am afraid that because of the Ehlers Danlos the results won't last for five minutes, so that makes it not worth attempting unelss I was in dire straights, as far as I'm concerned, so those alternative options mean so much!  Thank you!

Glad to help you know there are other options Chris. There are so many ladies out there that don't realize they do have other options. Unfotunately, some don't have computers, others are elderly and some are all alone or are in retirement homes coping the best they can. There are so many ladies that cannot have surgery or are afraid of surgery. So whenever, I go on a web site I look for those ladies who are searching desperately for other alternatives. I am so happy when I find them because then I can steer them to the other options and they at least have a choice of their own to make. Not pushed in one direction with no other options.

Keep up the positive attitude Chris and you will be just fine. Look after yourself and whatever is right for you , you will decide as you go along what feels right and works for you. Its great to have this forum isn't it? We can all learn things and help each other. I am not just on this forum, I try to help others on the other UK forum discussions as well. You see, I have scoliosis too, which is a severe curvature of the spine. I have had that since I was 14 years old. They offered me surgery to put a steel rod up my spine and straighten it when I was only 14. I opted out of surgery and told them that I would learn to live with scoliosis and I have never regretted it to this day. One day I read an article about a young lady who had surgery for scoliosis and she woke up crippled for life. The doctor said there was a mistake and she would never walk again. Then I heard that in some cases the rod had to be changed or slipped. Thank goodness I have also heard about quite successful stories from young ladies today who have had spine surgery. Things have progressed a lo since I first had scoliosis, but again, do you see why it is so important for each person to decide whether to have surgery or not? Don't be ever fooled into thinking surgery is a quick fix. Every surgery is a risk no matter what type of surgery it is. Its a matter of how critically necessary is this surgery and who is the surgeon? Those are two of the most important questions one needs to ask themselves and certainly do their homework. Well, I guess thats it for now. We all have mountains to climb and I believe no one gets through life without some of lifes challenges. Two things have always helped me through everything in life, a positive attitude and lots of prayer.

                            Happy Sunday everyone

                           Blessings to you

Lynn, I'm on the scoliosis group too!  Mine only developed fairly recently and they discovered that one leg was 2cm shorter than the other (I think probably down to the arthritis) so told me to get one shoe raised fast, which I did, or I'd need a rod in my spine.  I'm also on the oesteoporosis group since my GP told me I had osteoporosis, put me on Alendronic Acid which gave me horrendous side effects, only for my bone density scan to come through and I found I was well below treatment level!  But yes, it is SO good to feel you can help someone else!  I'm so pleased you've had a positive outcome without surgery for your scoliosis - yes, this will give others options too!  You say about lots of prayer - when I was waiting for my op for cancer I was in a terrible state terrified that it was spreading while I sat and waited for the op and one day I was in such a dark place, I prayed and suddenly saw myself in a circle of corn (I can still remember this so clearly - I looked down at my feet and was wearing leather boots like children used to wear in Victorian times)  and the corn was so high that it was throwing the area I was in to shade, and I couldn't see where I was going, but in fact a few steps in the direction I was going took me to the edge of the high corn and into the sunshine - I couldn't see from where I was just how close I was to that.  That lifted me out of the dark in an instant, and the rest of the time waiting for my op was fine, without that panic.

But going back to scoliosis - the awful pain I was gettind was remedied by a TENS machine!  And it worked long term!  Amazing!

Take care and thanks for giving me those options - it makes all the difference in the world when you feel you have choices and are in control:-))))

Chris, I am so glad you said that prayer when you were frightened. If you truly believe your prayers will be heard. I have had tons of blessings in my life and there is no coincidence that the Good Lord heard my prayers. I also have one leg a little shorter then the other. I solved it myself when I put in two Dr. Scholls inserts into one shoe and that gave me the height I needed to help me balance off the difference. When I buy slacks I have to sew the hem of one leg, just a touch longer then the other at the bottom of the hem. I have learned all the tricks of living with scoliosis. Again, we all have challenges and we have to look for solutions that will help us not hurt us or make us worse.

That prayer you said and that vision you had. I have heard so many others tell me about their prayers and visions as well.

Just a short note to tell you my experience with prayer when my father died of cancer, I was with him holding his hand. When I got back home the next morning after my father passed away, I stood where my father and I use to sit on the deck talking about and joking about two white butterflies all the time. We laughed and talked about these two boyfriend and girlfriend butterflies we called them because they were always fluttering together. When my father passed away, I looked up to the heavens and asked my father if he was okay to please send me a butterfly dad, not the two white butterflies that we always joked about, but another butterfly that I have never seen. Honest to God within a few minutes the most beautiful butterfly in the world that I had ever seen fluttered right beside me landed on the branch of the bush in front of me and fluttered it wings three times. Then it left and I never, ever saw it again. That was truly my gift from heaven that my dad was okay. You can believe it or not, but believe me this is a true story and I am not afraid to tell people about it.

                   Blessings to all of you who have lost a loved one

                   Lynn

That's beautiful Lynn!  Amazing.

Interesting that you've got one leg shorter than the other too!  I'm currently trying to build up spine muscles with the arm bit of the cross trainer (can't use the foot bit because it's too painful on the knees) but I can feel it working the upper body muscles:-)

Chris my one leg is shorter then the other because of my curvature which bends to the right shoulder. I have a severe curvature. So imagine how ones spine starts at the back of the neck and goes straight down to meet the lower spine at your tailbone. My spine starts out straight from the neck then takes a complete huge turn all the way towards the right, like a bracet this  ) like a bracket to the right. Then it curves in again down towards my lower spine area. So my curvature is very noticeable , so I try to walk as straight as possible and wear loose blouses so it will not accentuate the curvature.  So thats why one leg is shorter when you have scoliosis, because the spine is out of allignment and brings the one hip up further which affects the length of our legs.

                                       Blessings to you

                                       Lynn

Ah, I never got the answer to this before - so the leg is shorter because of the curve in the spine?  So why was it urgent I raised that shoe (the left one, and looking from the back the curvature goes towards the right)?  It was funny - I hadn't noticed until it was pointed out that one leg was 2cm shorter than the other but when I saw photos taken the year before I was standing like the leaning tower of Piza!  A definite tilt down to the left!

The leg appears shorter and is shorter not only because of the curvature, but what the curvature does to the hip as well. For instance, my left hip is higher then my right hip which causes my left leg to be shorter. Even though my curvature is bending to the right, it makes my left hip higher and thus the left leg shorter. Thats why I put a couple of Dr. Scholls rubber insoles inside my left shoe so that I get no pain from my left leg when I walk now because I balance out the left leg so it isn't being strained because its a little shorter. I figured this out for myself some years ago about how to cope. I always look for natural remedies when it comes to anything wrong with our bodies and easy simple solutions that we can figure out ourselves. Isn't it strange that we both have a prolapse and scoliosis too Chris. I hope you don't have too much pain with yours. I find I cannot sleep on my back too much and can only sleep on one side, my right side, but thats okay. 

                                                  Blessings to you

                                                  Lynn

Both of mine were reckoned to be linked to the Ehlers Danlos Lynn.  You don't have hypermoblity too, do you? I did have bad pain at the beginning of the year and went to a GP and was told, without them looking at it, that it was arthritis and that was the end of that.  I went back again 6 weeks later, told it was arthritis again.  It was only when I saw the Ehlers Danlos team and mentioned the pain that they looked and immediately said I had scoliosis and sent me off for x-rays.  Then I was told that if I didn't raise the shoe it would get worse.  From what you've said, I'm wondering if that was actually correct information now - would it have got worse if I hadn't raised the shoe?  I think I've had more pain in both knees since raising the shoe, but am hoping that will settle at some point.

No Chris I do not have hypermobility. I had pain in my left leg which I attributed it to being off balance. I also thought I may have a little sciatica as well. However, there is a difference in what I did and what you were told to do. I did not raise my shoe. I bought one pair of very good walking shoes with a good sole and I raised the inside of the shoe with the Dr. Scholl rubber inserts. I got the right thickness until I saw in the mirror when I stood that my two legs were evenly the same height. I wouldn't want to raise my shoe because to me that is something entirely different. May have the same results, but I am not sure about that. Maybe should try what I did and see if there is any difference. It helped me a lot and no more pain in that leg when I am walking.

                    Blessings to you

                    Lynn

Lynn, the difference between my two legs was 2 cm and that was too much inside a shoe - it pushed my heel too far out.  I did start with raising an insole inside and managed that for about 1 1/2 cm but then heel just kept slipping so I raised the shoe heels instead and shoulders are now level, but I guess knees were just used to different weight distribution so it will take a while for them to adjust.  But the arthritis is pretty severe in both knees.  I was offered knee replacements many years ago but have coped pretty well without surgery and have been told since that because of the Ehlers Danlos there is less likelihood of a good outcome because ligaments won't be as strong as they otherwise would.  It doesn't stop me doing a lot, but I can't do stairs at all:-)  But I'm OK:-)

My husband has bad knees too and he finds going upstairs is okay and is not too bad on his knees. But going down stairs put a lot of pressure on the knees and therefore hurts more going downstairs. He was also told to lose some weight as well and his knees would feel better from a lesser weight. He did lose about 17 lbs and he did notice a difference. He also uses that arthritis cream and rubs it on both knees. It starts with the letter V and it is on telvision quite a bit for sore achy joints and muscles. He said that works good too. One thing for sure. It is better to walk then not walk when you have bad knees. It eases up once you do regular walking and helps build bone instead of losing bone. My husband and I walk at least 1 1/2 mile to 2 miles everyday.

I can certainly see why you had to rais your shoe and not the insole so I hope eventually you feel better regarding those knees.

                                                                  Lynn

Oh yes, going downstairs is definitely worse than going up.  I lost weight but have been bone on bone for quite a while now.  I didn't want to use Voltarol because it can have side effects but Ibuprofen works fairly well at times for me. 

Whenever I have any pain I use asperin. Asperin helps inflamation and its the only thing that seems to work well with me and doesn't give me any side affects. I cannot tolerate tylenol as it makes me nauseated. I guess we all have to use what works and what doesn't give us side affects. I am not much of a pill person at all and asperin is the only medication I take if I need it. Never taken anything else unless I had to take an antibotic for an infection or something. Other then that , it is natural remedies for me.

                                             Lynn