Desperate for answers

Submitted by Marble on October 30, 2013 - 7:37pm
Body: 

Hello to all readers

Firstly I would like to say a big thank you to this website as I do not feel so alone any more.

I have not found a story like mine to learn from so I thought I would put it to all you women in the hope I find answers or some comfort.

I am 44 years old and have had 3 children all vaginal deliveries, the first I had an episiotomy, the second I tore very bad and the third was just very difficult, I did not dilate fully and began pushing which lead to bleeding and a very distressed baby. Prior to my first baby I had a termination which I feel caused a lot of problems. Over the years I have had lots of different procedures for different problems. I have had several laparoscopies’ which showed endometriosis, adhesions of the bladder to the bowel, cysts on the ovaries and a tilted uterus. Periods were always erratic and I could bleed that heavy for weeks on end that I could not go about my daily chores and abdominal pain was horrendous, sex has always been painful. This i some times put down to being sexual abused at a young age.

At 31 years old and my youngest child was 15 months old I was told by my gynecologist that a hysterectomy would solve all my problems so I had a fully hysterectomy only to cause more problems. To close the cut the doctor used a wire with ceramic beads on each end but put it through a muscle in my stomach which took several years and lots of investigations to discover. Some of the investigation work entailed cutting the top of the vagina open to allow the built up blood to drain (I had a large swelling on one side of my cut). This left scar tissue which was describe to me as a cauliflower clutter of nerves which had become hypersensitive....this lead to injections of steroids to reduce swelling and pain for several more years.

I have suffered from all kinds of infections from cystitis to sever pelvic infections which have made me very ill and lasted for weeks on end and taken several courses of antibiotics to clear up the infection. Over the years I have had bouts of constipation and strained to make my bowels work. It is still not easy sometimes but I try not to strain anymore.

About 6 weeks ago I got another infection and was passing blood and felt very sore, on investigation my urethra was the size of an average thumb nail and very red and slightly bulging, this catches and stings like mad even on just sitting down. Just inside my vagina (and only just )I have a bulge that I can only describe like a wrinkled penis. When I attended the doctor he said I had had a prolapse and he referred my to a urologist who wanted to test me for bladder cancer but I thought I was being referred for a prolapse. I have had the camera put in my bladder and that thankfully is clear, he then said I needed to go back to my doctor to be referred to a gynecologist to get my prolaspe fixed. I have now seen a gynecologist who said I need to also go and see a urologist, I explain I just had two days prior and he didn’t comment. He said I had a bladder prolaspe and a urethra prolaspe and that it was complicated as the muscles around my urethra had collapsed and surgery was not an option as it would be very dangerous and complicated and if he did try surgery he would only get one chance. (not sure what he meant by this but can only assume if I had surgery and it went wrong then I may end up with a colostomy bag but not sure). He also advised me he thinks I have a lot of scar tissue at the top of the vagina and possible nerve damage and said each problem needs to be treated individually. He is firstly doing a referral to a physiotherapist and said he will see me again when they have seen me and done some physio sessions.

I am getting beside myself as I can not stand for longer than 10 minutes as I feel that I have a heavy weight dragging my insides down and the discomfort is awful and takes a long time to subside after sitting down. I am also suffering from stress incontinence. Earlier this year I had a bad fall from my horse and broke my back and was very lucky it was the section around where the bra strap lies, I am unsure if this has contributed to my prolaspe problems. At this moment I feel I have had my life put on hold which is making me very down. I work full time as an accountant owning my own practices which is very stressful then I live on a small holding and have animals which need attending to daily and this involves a lot of walking.(Which i am unable to do at present) I have not been able to horse ride due to my back but was just getting to the point of riding again when the prolaspe happened. I feel that sore that I can not even think about sex with my husband which I feel very sad about, he has been brilliant and supportive and keeps positive something I am struggling with. My children try to be but then they are teenagers!
Does any one know if the yoga DVD's will help? I am interested in the correct posture that is frequently mentioned and would this help my prolaspe, as mine has been very bad due to my fractured back along with the fact I sit at a computer most of the day. Is there any thing I can do to help the soreness and swelling of the urethra? Will I be able to ride again or have sex? I welcome any advice, thoughts or suggestions on how I can help myself. I say my prayers in the hope that it may help but other than that I do not know what to do. I have considered going for a second opinion with a urologist/gynecologist but not sure if this is clutching at straws. I look forward to any replies.

Forum:

Surviving60

November 1, 2013 - 7:55am

Hi Marble and welcome. This is such a complicated posting, not many of us here would even know where to start giving suggestions. I am so sorry to hear of all that you have been through.

First let me say about the yoga DVDs, that everything in Christine Kent’s body of work starts with retraining your body in Whole Woman posture. This isn’t just an exercise program, it is a remolding of our bodies back to the natural spinal shape we all had as children, before we were taught to suck our bellies in and hold them tightly. This more than anything else has contributed to our prolapse. My point being that the exercises alone do not constitute the Whole Woman work; we need to adopt this posture, which takes time and patience, and then everything that we do during all our waking hours is done holding ourselves in this manner, which eventually becomes quite natural to us.

Hysterectomy and other surgeries do compromise the pelvic organ support system. We try to get our organs to stop pressing into the vaginal space by encouraging them to return to the relaxed lower belly where they belong. This is hard work at the beginning, and even moreso when you do not have the ligaments of the uterus to help pull the other organs along. And sometimes the structural changes brought about by hyst and other procedures make this posture harder to adopt at the beginning.

My suggestions would be, first to avoid having any more surgical procedures for now, and instead take a look at the posture work and see if it is something that makes sense to you. WW posture is good for every woman, even those who have had hyst. You have a few other complicating issues as well. It’s all about maintenance, for all of us.

You might also want to consider a phone consultation with Christine Kent. She can put the pieces of your situation together and try to address the big picture better than anyone else. Good luck and best wishes to you! - Surviving

mums the word

November 1, 2013 - 1:24pm

Hello Marble,

I have not posted on this forum before but felt compelled to do so after reading your post. I am so glad you found WW and no longer feel alone. Everyone on this forum is here in search of answers, to share their stories ( good and bad) and to help and support one another in any way they can. We all have our own unique stories and your journey thus far had been an arduous one - you have suffered greatly!

I echo surviving in saying that WW is much more than an exercise program me. As the name suggests it treats the body as a whole not just isolated anatomical part. Our bodies tell our stories - what we eat , how we sit/stand/walk, what we've been through and WW addresses all this in a holistic approach. It is not a quick fix that so many seek nowadays but rather a self management program that involves slow gentle progress.

I agree that the Posture is key and I would advise you to try and assimilate that over the coming weeks. I would also think about your sitting posture, it is difficult to sit for long periods even in WW posture - so take regular breaks, stand up in WW posture , take a few steps and sit down again , the body prefers movement!

Make sure the physio you see is qualified in pelvic health and can perform an internal exam. Hopefully they can address some of the scar tissue and muscle tightness through manual techniques.

Congratulations, I think writing your post was the first step on your new journey - it may be another slow and hard one but one where you take time for yourself where you rest when your body tells you it needs it. There is a wealth of information on this forum - it may not have all the answers but it certainly will point you in the right direction. Please don't despair you are not alone!

Coping

February 11, 2014 - 7:13pm

Hi Marble, My heart goes out to you. I'm just a newbie looking for answers myself since having a hysterectomy on 08-13-13. On my final checkup before they released me I was told by a nurse practitioner who is with the practice that did my surgery: Don't sign up for anymore surgery; there are a lot of risks that go along with it." So hold that thought. I'm not qualified to give you whole woman advice, and I'm just beginning to master the posture myself, but when I'm standing in the posture and holding it and trying to keep it and trying to observe, I'm beginning to feel the prolapse slowly going back in, but I really have to work hard at keeping it. As for difficulty in going number 2 (bowel movements), I've found that magnesium keeps me regular. I take it with my calcium because if you take only calcium it will bind you up. So if you take 1000 mg of calcium you take 500 mg of magnesium with it. I guess you're pretty young to have to worry about taking calcium though. Anyway there's something called "CALM" which is from a company called "natural vitality." You can get it at health stores. Its magnesium, and you take it at bedtime, and you definitely will go. Instructions on the container will tell you how much. It also calms the nerves which is what magnesium will do. I also take cranberry capsules to prevent urinary tract infections. I have not had an infection since 1986, so I guess it works. Also I just remembered that if you have kidney function issues, you shouldn't take magnesium. Of course you can eat prunes everyday which will make you go pretty good, and also eating beans everyday will also work, and also Mexican food especially the refried beans. Hope things begin to keep getting better for you. I've also heard that the body will heal itself. There is a remarkable healing mechanism built in there. I am praying for you. Keep the faith and remember you are not alone. Coping