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scheduling sacrocolpopexy and cystocele repair...more than a little scared
Women's Health | Last Active: Sep 20 10:41am | Replies (77)Comment receiving replies
I am 62 years old and have had stage 3 cystocele (bladder prolapse) for over 10 years and it has not bothered me much until the last year. I had a bout of bleeding due to some rubbing but it finally quit and I got checked out for uterine cancer (which I did not have). I think the bleeding was brought on by rubbing from a pessary that I finally tried due to urologist's urging. Recently was told that my prolapse is now stage 4. Went to a urogynecologist who is highly recommended and he said the best procedure for me is sacrocolpopexy. I was a bit surprised that he wanted to do a hysterectomy and so questioned him quite extensively. He described it as a "once and done" procedure saying it would allow me to have a better quality of life and I wouldn't have to think about it anymore. Since my mom is 96 and never had a hysterectomy I guess I thought this might be overkill. In order to get out of his high-pressure office I scheduled a follow-up. I just felt like he was way too anxious to get me into surgery. When I cancelled my follow-up with him I was questioned aggressively by the receptionist and received multiple follow-up phone calls trying to get me to come in and discuss "my surgery." My gynecologist thought he might be a bit aggressive in what he had recommended and so she sent me to another urogynechologist in town who is highly regarded. I liked him much better and after examination he recommended the sacrocolpopexy as well. He said he did not think that a simple anterior ligament repair would hold because my ligaments are so weak. He said the sacrocolpopexy done robotically with hysterectomy is the state of the art procedure for my situation at this time. He was very willing to explain things and answer all of my questions and was not as pushy as the first urogynecologist I went to. He even said if I wanted to, I might come and work with his nurse on another pessary fitting to see if I had better luck. He even told me that he could see from my examination that my previous bleeding was likely coming from a small area at the base of my cervix that looked to have healed recently. He said it could have been caused by the previous pessary or just by rubbing on the tissue which was a bit atrophic. He also emphasized that using estrace and/or vitamin E gel or any type of cream or gel would add to my comfort level.
This was a couple of months ago and I decided just to take a break from going to doctors. I have been using the cream and it has helped. However, in the past couple of weeks it seems that the cystocele is causing me more discomfort. It is very difficult for me to empty my bladder and I have had a couple of nights where I am up and down all night trying to empty it and as soon as I get back in bed I feel like I have to go again. I am planning on making an appointment to go back in to the second urogynecologist and work with the nurse that does the pessary fittings. I had told him I was extremely afraid of the mesh and he said it is not the same mesh or the same surgery that you see on all of the class action lawsuit commercials. I just don't know who to believe. I am so confused and feel that the situation is not getting better, in fact, it is really getting worse.
I would like to know if there are any doctors at the Mayo Clinic that perform sacrocolpopexy or who do any type surgery on cystoceles. I would be willing to come and consult one of them but I just don't know where to begin. I would also like to hear from anyone who has had such surgery and how their recovery has been. I have some issues with my back as well and I feel like the prolapse is adding to a heavy feeling in my back and pelvic area. I apparently don't have UTI which is surprising given that my bladder seldom empties. I just need to take the next step but don't know what that is. Help? Direction? I really appreciate it.
Replies to "I am 62 years old and have had stage 3 cystocele (bladder prolapse) for over 10..."
Hi, @gailg. There are urogynecologists with lots of experience with those surgeries at Mayo Clinic. If you look at the bottom of this page, you will see a list of four of them. You can click on them to learn more about them in their profiles, if you'd like:http://www.mayoclinic.org/departments-centers/obstetrics-gynecology/minnesota/doctors/by-specialty.
You mentioned you felt your symptoms are getting worse. Which symptom is most bothersome at this point?
Hi @lisalucier
Sorry for the late reply. I actually must have missed your post. The symptoms that seem to be getting worse are that the prolapse is more pronounced (it was diagnosed as stage 2 or 3 and now they are saying 4). I think it is beginning to affect bowel movements a bit and I had a couple of nights a few weeks back where I was up all night feeling like I needed to urinate but just could not. I ended up going back to the second Urogynecologist that I went to and liked. He used a catheter and I immediately felt better. He really thinks I need to have a sacrocolcopexy with hysterectomy but he would do it with the robot laproscopically. He says the mesh is different from the original mesh that was used early on.. I am going in next week to do urodynamic testing which would be a part of the pre-op procedure but have not scheduled the surgery yet. He said that I can decide whether I want to keep my ovaries or not if I decide on surgery. Oddly enough, yesterday, somewhat out of the blue I started having an aching feeling in my pelvic region feeling like a menstrual cramp. When I got up I immediately realized the prolapse was very pronounced again (it had not been that bad since he used the catheter a couple of weeks ago). I was also bleeding--I had a lot of bleeding earlier this year and had a D and C and everything was okay. The urogynechologist told me that he had seen a small ulcerated area on the tip of my cervix where he thought that my bleeding had probably come from. He said to be diligent about using estrogen cream or any type of lubricant in order to make sure I do not get overly dry. I had slacked off a little bit and am thinking maybe that is why the bleeding started again. I am going to call him today to see what he says.
I will look at the doctors you mention and see about their profiles. I have done a lot of research and it seems that lot of the articles with a "mesh is bad" slant are older. The sacrocolpopexy robotically seems to be state of the art. I am just scared but know that I have to do something as this is very uncomfortable. I also have some back problems that causes pain in my legs. The more pronounced the prolapse, the worse this pain is as I think the ligaments stretching really do put a lot of pressure on my back causing a heaviness and exacerbating the.pain in my legs and back. Funny thing. I am extremely healthy in all the areas that most people my age have problems (heart, lungs, diabetes, etc--knock on wood). But I think I do need to make a decision about the prolapse as I have had it for many, many years and in the last year with the bleeding, the extra pain, and affecting other bodily functions, it is time to deal with it.
Thanks again for the information on the doctors.
Best,
@gailg
Hi, @gailg. Thanks for updating us. I am sorry your symptoms seem to be getting worse. Sounds like you are doing a very thorough job of researching your own situation and getting well-educated.
Seems appropriate, in light of the bleeding, that you mentioned talking to your doctor today.
Please do keep us posted.
Went to the best. Both erosion of the mesh and hernias are possibilities as a result of these surgeries.
@letsgo I am so very sorry you are having these issues. I hope you can get some relief soon. I knew about the mesh erosion but it is not as common as it once was. I was not aware of the hernia possibility. I have had another type of hernia for years and luckily no pain from it. But this one sounds like it must be addressed. I really wish you the best.
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Good Morning, I am sorry to hear of your experience with the first dr....I had my repair surgery done in March and it was successful it was done without mesh and I did not have to have a hysterectomy. My uro. told me that my muscle spasms may return like a fire storm but would settle down...well they did and I am back in p/t...I am glad I had the surgery I was stage 2 and was very uncomfortable when I went into surgery I was pain free thanks to the p/t....now I have swelling du2 to the spasms it is better but I am still not myself the p/t dose help another thing that has happened since the surgery is I had what I thought was a uti and it turns out the dr. thinks I have ic (no testing has been done) acidy foods cause painful bladder issues so in a nut shell yes I am glad that my insides don't feel like they are falling out and that I am not going thru the hell of one pessery fitting after another that only left me sore and sometimes infected...I did not get the sling I hear a lot of women had problems with that so I am lucky there but I am still in pain and have a dr. that will not prescribe valium (which helped with the spasms) he did order eruogics blu for the bladder pain but it upset my stomach so I am dealing only with the p/t .... I wish I could find another dr. but the practice I go to is the only one in my state and doesn't allow you to see other dr.s... I wish you luck