I have spent over six years knowing that in the middle of my abdomen something didn’t feel right. I did notice that I wasn’t able to use muscles in the center as much and then more problems grew. Physically a bulge was there and as much as I tried using muscles it wasn’t happening. I gained weight and yet my eating habits weren’t different and if anything better than they had been. I did many tests and doctors were at a loss. I started having major heart burn and then had bronchitis and went to ER late one night in 2018 and also asked her what she thought this was because coughing only made it worse. She looked at it and said “that is a hernia” and tell your primary doctor about it. So I did. I emailed her first and I had to come in to see her. She ruled out so much else; even gallstones where I had to do an ultrasound and meet a specialist. She felt that maybe a gluten free diet would help; even though I was tested and didn’t have a problem. She said she didn’t think I had a hernia. I pushed her though and she sent me to a specialist (gastrologist) and tried the gluten free life for over 9 months. This helped of course but I still didn’t feel it was addressing the problem. The gastrologist was judgmental and said he would have me tested but added “we tell you all to loose weight and you never do”. I got up and left. He also said I didn’t have a hernia but still ordered the endoscopy. This was only on the upper part of the GI and it showed a hiatal hernia is what I was told but still no doctor followed up on this. I was simply told loose weight. Let me just say that I’m not grossly overweight, I eat right and move a lot. Of course I say this and the doctors roll their eyes. So I experienced a lot of blame and judgement and started to believe it too.
I spent so long with that kind of treatment. I even changed doctors and met a new one that I was hopeful for. She seemed to understand that I was being mistreated and felt like I wasn’t listened too. But after meeting her one time I never heard from her again. Even after the endoscopy results. I wrote her to inquire and never got a response back from her or the nurses. I have emails explaining the pain in the middle of my abdomen and it feeling like a knife cutting down the middle. That when I did exercise it was worse. That I was eating very little and still had the pain. I was following a strict gluten free diet. Still didn’t loose weight but the weight hasn’t increased in years either.
I gave up. I have to admit. I bought online what was called a hernia belt because when I pressed into the bulge it helped the pain so I figured if anything that I could wear this and be comfortable so I could teach and get back to my life. So I got used to wearing it, bought clothes that would cover it and that is how I lived for the past 2 years.
In January this year though I decided to try again. A student I teach is a retired nurse and told me about her doctor at Kaiser. I had tried to see her before but she wasn’t taking new patients. But now she was open so I set an appointment. I saw her and she asked what I came for and I explained but this time I also told her that everyone has me lie down and then by laying back you do see the bulge. So I showed her and she said “that is a ventral hernia.” I nearly cried… ok maybe I did. She had me lie down and she said you can feel the hole; Even lying down. Everything I had been saying to others started to make sense. Then she went back over years of notes in the system and could see what I have gone through. She ordered a CT scan though just to make sure it was a hernia. Seems simple enough to have done and wonder why others didn’t do this.
I did the CT scan and the results also showed a very large item at or near my uterus. I went to see surgeons for the hernia but they said the item at my uterus had to be taken care of first because it is so big it is only pushing up the hernia. Seeing the CT scan of this was validating. Furthermore I had a CT scan back in 2011 so they could see the differences. My intestines were poking out of the hole. “No matter of exercise or yoga is going to fix this… you need more than repair you need reconstruction as the muscles have pulled away. But before we can do that you need a hysterectomy.” That was the first time being told that. The emotions flooded me and I had to wait weeks to meet the surgeon for that. In the meantime I had to do more tests to figure out what I had. The MRI revealed it was a very large cyst the size of a cantaloupe in one ovary. So when I met Dr Singh she did more tests and then wanted to talk to the hernia doctor to organize one procedure to help both. But she wanted this done in a week. So I prepared for surgery that same day I did more tests, got a bag full of items I would have to do for a full day fast the day before surgery and X-ray. A cyst may or may not be cancerous but all the tests wouldn’t rule it out and only having it removed and sent for testing would prove it for sure. So I also had to deal with cancer as a possibility as well.
Then I had to cancel or find subs for all my jobs for at least three weeks to heal. There was so much to deal with emotionally and I was worried but also so glad that someone was doing something to help me. Days before I had to go to the hospital for their check-in. Answering tons of the same questions. One section of the questions was if I felt scared to be at home, afraid or for others. Obviously this is a line of question for possible abuse or depression. I was glad to see them ask this. Then she moved right to the next question “do you wear prescription glasses”. I smiled and said “really?” Can you pause there? “I love that you are asking the questions about possible safety and abuse but I think before you just jump to another topic you could use a transitional sentence”. We laughed because she realized in her doing her daily job she forgot about being present for the patients. Same thing happened with instructions I was given about my recovery. Funny to see the nurses get so matter of fact and be so direct but forget to have a softer side to the advise they are giving. “After surgery nothing in the vagina for at least a month”. Ok that made me laugh.
So I had the surgery. Everyone was wonderful from doctors too nurses. I felt really blessed to have the best and caring surgeons that worked together to operate on me. The pain was really bad and I kept moving a bit each day just like they wanted. So many amazing people there to make sure I was comfortable. I did have to have stronger IV pain medication by day 2 because I tried to get by but my body needed to rest and heal. So I was in the hospital another day and then back on pills and sent home. Recovering from surgery is not easy. The muscles you use to get up, move or sit up are all in the abdomen. Coughing, sneezing and laughing. All there. But as time goes on I appreciate these little things more and more. I have taken pictures of each week and some feedback from family is why post it? I am doing so because I don’t know why I need to hide my scars. I noticed when my husband told our friends I had a hernia surgery that they had one reaction but I told him “you know I had a hysterectomy too” that many men didn’t respond to hearing that well. As if that is private… a woman’s problem. But I dislike that attitude so I am vocal about saying what procedure I had.
My husband made sure I was taken care of and continues to make sure I don’t lift anything over 10 pounds for another couple months as the hernia is still healing. I can feel what this has done to my spine. Years of wearing the brace/belt and my low back muscles and bones are not as strong. So in a few more weeks I will be working on that. Then slowly strength and core. But all in time.
Dr Singh kept mentioning how glad she was we did this right now. She said this a few times. I asked her if that was due to some reason regarding my health. She said it didn’t but wouldn’t say more. The day after my surgery everyone in the US started to lockdown for the Covid-19. The hospitals put in strict guidelines for procedures and visitors. When I left the hospital it was a ghost-town. The lobby was completely empty. I was lucky to get in and be helped when I did because I am not sure it would have been listed as an emergency procedure. Yet when I followed up with her later online I asked about it again and she said she knew that this was impacting my quality of life. True and I had just learned to live with it. “I have no doubt”, she said “that the cyst was pushing up and causing the hernia. Furthermore it was impacting your hormones and Thyroid and therefore causing the added weight”.
During my time with her she had nurses and some doctor assistants and she would tell them “She knows her body”. In fact when I got more results from the ovary tests weeks later she said “what I find is that when I tell women about the results often I am not telling them something they don’t know.” They noticed that there were signs of endometriosis, even tough tests were negative.
So why write all this detail? Not to complain; in-fact I feel lucky. But first so I can remember and also to help others who may also be searching for answers. Doctors are NOT perfect and they are often playing a guessing game too. Keep searching and looking. Even when you are tired and doubting. I cried after so many visits and my husband would ask why and I said “Because I know it isn’t the answer”. I just knew is all I can tell you. You do know your body. Learn and explore others help but never stop trusting yourself.
I hope this helps if you are doubting. You will know when you find those that listen and help you find the answers. What I found was that many of them would meet with me and put the computer away and say “now I want to listen to you”. They aren’t just young but many older doctors I met who approach their practice this way. I am so glad to know the healthcare community is taking into account that their patients need to be heard.
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I would like to thank those at Kaiser who helped me from my new primary doctor, surgeons, nurses and assistants. To the people who cleaned, brought me food when I couldn’t order it, and transported me from different places within the hospital. I will never forget those who helped me. (Some didn’t but I don’t take that personally - that was you and I hope you will find peace).