My story :(

[Sadface42]

It all started in January 2019. I was having problems with my menstrual cycle so I went to the doctor to inquire. During the appointment my doctor had a quick look over my files and exclaimed “oh wow, no one contacted you to let you know the results of your ultrasound?” My heart dropped at this point. “What is it?” I asked. “You have a tumour the size of an orange in your uterus!” “What!” I exclaimed. I was then informed that I would need to have a vaginal hysterectomy ASAP. After getting over the initial shock I started to worry that I had cancer and I was going to die. Although it seemed likely that the tumour was just a benign fibroid, it still kept me up at night. I was told I would have to wait about six months to have surgery due to the wonderful Canadian universal healthcare system. I practically had to beg to get my surgery done before my surgeon went on his annual summer vacation. After suffering from a bunch of bizarre symptoms it was finally the day of my surgery. June 12. A day I’ll never forget. I thought there was no way I could get any worse but boy I was wrong. When I woke up from my surgery I felt great! I went home the next day still feeling pretty good. I found out that the fibroid was not cancer but instead of being the size of an orange it actually grew to be about the size of a cantaloupe! “Wow” I thought “how the heck did he get that thing out of me through these tiny little incisions?” Everything was going as expected. I was starting to come off of my meds and was feeling great. It was about eight days after my surgery that I decided to start getting caught up on some paperwork. I sat in my office for a few hours and when I finally decided to get up, I felt something drop. It was very alarming and I quickly ran into the washroom to see if I could figure out what was going on. I felt something down there that was not supposed to be there. This terrified me and I went to the hospital. It was there I was told that I had suffered from a prolapse. For those that don’t know, a prolapse is a fairly common occurrence for women who have had children. It’s basically when your bladder and your rectum decide that they want to try to exit through your vagina. I felt a lot of pressure and it was very uncomfortable and obviously emotionally upsetting. Within a few days all of a sudden I realized that sitting was really uncomfortable. I found myself teetering back-and-forth from one butt cheek to the other and leaning off to the side. Within a week I couldn’t sit at all. I started having all sorts of strange feelings. Feelings like someone was stabbing me in my groin. Feelings that my entire vagina was on fire. Feelings like someone had kicked me in the crotch with a steel toe boot and their foot was still in there. It was absolutely excruciating. I was in and out of the emergency room for weeks begging for help. On top of all that I was having a lot of issues emptying my bowels. I wasn’t actually able to go to the washroom unless I used a ton of laxatives. I had no idea what was going on. After a few weeks, I quickly realized that no one was actually going to help me. Their tests didn’t show anything, any reason for my pain, and I was made to feel like I was crazy. After another week at home with things getting worse I phoned my mother in tears and begged her for help. This was the beginning of another month of sheer hell. I spent another few weeks in and out of my surgeon’s office with no help from him either. At this point I was ready to jump off a bridge. I was so emotionally and physically drained I wasn’t sure how much longer I could carry on. It took a toll on my family as well. We were all coming to our breaking point. It was around this time that I was finally admitted to the hospital for further investigation. Unfortunately, at the same time my surgeon had gone on his annual vacation and I was left with his colleagues trying to figure everything out. It was the longest 10 days of my life. Turned out I had suffered from pelvic floor muscle damage. “Wow one of your muscles is not where it supposed to be!“ one of the doctors blurted out in surprise. I was in shock. “How did this happen” I thought?. The rest of the time I was basically ridiculed by all of the nurses who were talking behind my back about how I was making this all up and I’m obviously seeking drugs. But I mean how could I blame them? I was given all sorts of superstrong drugs and none of them worked. Nothing would touch this pain. By the time I got out of the hospital I was so weak and shaky that I couldn’t even walk from my car to the house. I literally laid in a hospital bed for 10 days only getting up to use the washroom. I came home to my husband’s family reunion. And everyone was staying at my house! Great timing! He was so preoccupied with his family that I basically was just left in my bedroom. I didn’t eat. I couldn’t sleep. I was in so much pain. My husband found me on our bathroom floor in a puddle of tears more than once just wanting to end it all. Thank goodness these feelings eventually passed. I got myself into a little bit better of a headspace and started to try and figure this out. I started pelvic floor physiotherapy which was recommended to me by my doctor. I was told that I had a super tight pelvic floor and needed to learn how to relax it. Unfortunately after many months of this I was still in pain. My physiotherapist eventually dropped me and told me that there’s nothing else she could do. I have no diagnosis. I personally think that when my doctor took the fibroid out through my vagina and manually dilated me he did a lot of damage. So when I see my surgeon he just hums and haws and tells me to come back in six months. I don’t think he actually believes me. I think he may be in denial about the fact that he damaged me. I had PTSD from this for a few months and couldn’t go to my appointments without a family member. I still can’t sit. I spend 75% of my day lying down because standing is also painful. I feel like I’m carrying around a bowling ball in my crotch at all times. I’ve been up and down mood wise. I have good days, I have bad days. And in the midst of all of this I actually found my husband on dating sites. I knew he was deprived but never expected this! This broke my heart. This broke my spirit. What did I have left? I confronted him and we argued and my pain got worse. I ended up forgiving him in the end because I just don’t have the energy to fight. I mean can I blame him? Who’s gonna want someone broken like me anyways? So this brings me to now. I try really hard to hide my pain from my husband and daughter. This helps in some ways but also makes things worse. They expect me to just continue on like my normal self, but forget that I can’t. I mean I try to tell them to think about how it would feel but they just don’t get it. I swear they think I’m just being overly dramatic. I wish I could just explain to someone how this feels. I’ve been to countless doctors and specialists and pelvic floor therapists. I am told it’s all in my head. Sometimes I wonder if it is. It makes me question myself a lot. I try so hard but the pain just won’t go away. After much research I have pretty much diagnosed myself with pudendal neuralgia. I have no idea if this is actually what’s wrong with me but it’s the only thing that fits with my symptoms. Thanks for listening. I know this was really long. I really need some help. I’ve looked at the website and since I’m from Canada there’s no doctors to help me. I just wish that someone in my family would fight with me to help me figure this out. Hugs to all.

[sadie]

sadface42
I copied your post, and pasted it in an email and sent to myself, because my computer reads me my mail. My attention span very short so this may be helpful to anyone on the forum when it comes to long post , especially ones like this that are so heart felt. So to start Sadface, I believe you and support you and i am sorry you are not getting this same support where you are. You have laid it all out very well.

To begin you are in Canada ..and I know nothing about the doctors there except... when i search Canada in the upper right search bar on this page, and read through some of the posts, the only name that really comes up is DR. Kirk Andrew . Again I do not know anything about him so you may want to investigate. Just because a doctor is mentioned does not mean anything one way or another. Try not to jump in to the first treatment or surgery that comes along out of desperation. Get a second opinion and remember if you are on pain killers they may effect your decision making. I know it did mine.

The first dr that did the surgery, who sounds like he is riding the blame clock out, caused these new issues. I would not go back to someone that harmed me and left me hanging. I would find a neutral doctor that is sympathetic, and understands the totality of your multiple issues. I realize the hospitals have covid patients in them at this point but maybe you can do tela medicine and talk to a dr sooner then later.

to address some things you said.... you are not broken... and not seeking drugs ...and you would stand by your husband in the shoe was on the other foot, i am hoping...... Your story is not unique as so many have horror stories and with the right doctors and meds etc they have hope. I hope you can explain in detail to your husband your symptoms, (when he is willing to listen as timing is everything), and tell him hope much you need his support now. Even if he is not responsive to you, I know you can do this . Maybe a friend, cousin or sibling will be sympathetic and can help.

I know this post is not all that new and i am sorry i did not see it sooner. just because you live in Canada do not think you can not be heard, as i hear you and I know with net working you will find help.

You will be your biggest and strongest advocate. Do not hold back when describing the things you posted, as with your Canadian health system the squeaky wheel gets the oil ...

I am so sorry I can not help much more then this. You will be in my thoughts and prayers. I would find out if the cause of the prolapse was because of a mistake that was made via the surgery... if so, you may want to go back and order all documents pertaining to every visit you had with him, his office notes and comments and any blood work you had ...and the operation and recovery notes (during and after surgery to see if he noted any complications).

I would put my complaint in vivid detail and fax that to his office and get confirmation. I am shocked that he is dismissing you, and making you feel it is in your head. I know many that have been made to feel that way too. You will also need his office notes from your recent visits after ward, where he seamed dismissive, to show that he is aware of the problems ..... You may have to sign a medical release form to gather every thing. Then read it all, this will help you formulate good questions, and will be helpful to the new doctor so that you are on the same page. Scanning it all into your computer will help you keep it in one folder.
Excuse all the mistakes, but it is late but I wanted to respond.
Stay safe from this nasty Covid 19 and try to stay calm, Blessings Sadie