Getting anxious for my gynecologists' appt on Tuesday.... I'm terrified I will be ignored again

This will be the first in-person doctor’s appt since before Covid started. I’m so excited because it’s an appt with a new gynecologist. I’m frustrated because what if it goes like my last appt with a new gynecologist… only 2 months ago.

Yesterday was the worst day. I struggled through my shift at work....I was training a newbie, so I could not call in for back up. I had to be there. I could feel the pressure building up in my abdomen. Every time I stood up I felt like I was going to lose control of my bladder or bowel. It’s a very uncomfortable and embarrassing feeling, the feeling like you are going to have an accident and the anxiety that causes you to clench everything you can until you can get to a bathroom, but doing your body begins to make the weirdest noises. Internal gas? Bum gurgles? Dropping the beat?

When I left work to drive home I couldn’t get comfortable in the car. Sitting made the pressure worse, like my whole lower abdomen under my belly button was going to split open and explode. I was so nauseous, dizzy and started to get the chills/shakes from the pain. I wish I had someone to drive me home…

I got home and tried to eat as much of my lunch as I could. I didn’t feel like eating but I had blood work the day before and that’s when my period finally started (after a week of cramps). I knew I needed to get some fuel into me.

I sat on the couch, curled up in the corner and cried. I’m so sick of this. My periods have always been painful. In the last 2 years it seems like the next one is more painful than the previous.

My period past:

First period: 11 years old. I remember my periods from that age being very heavy, and I had terrible low back pain. I remember being at school in grade 7 and not being able to get up from my seat because the pain was unbearable. I remember sitting at the computer, crying, and kind of just rolling off the chair and crawling over to the wall to sit against it and hide.

Late teens/early 20s: I started getting pinching pain in my left side. It would wake me up at night, and take my breath away at the most random times. It was always the worst mid-cycle. A doctor explained to me that it was ovulation. She said the pain should come every other month, because the ovaries take turns releasing eggs. I told her it was always on the left side.

22 years old: I remember walking upstairs at my house and falling to my knees. I had a sudden explosion of pain in my left side. I went to the hospital. They did an xray and told me I was constipated because they could see poop. I had no bowel issues at this time, I was pooping every day, normal regular schedule. I went to a different doctor and they did an ultrasound and found a cyst in my left ovary. I still had a dull aching pain 24/7 on my lower left side. This pain would get worse around my period. This is when I first heard the word endometriosis. The doctor suggested a laparoscopy surgery and sent to a gynecologist.

Later that year I had the surgery. I was dx’d with adhesions. My uterus was inflamed and reddened. My left fallopian tube and ovary were stuck to my bowel. The bowel was densely adherent on the left-side.

24 years old: Still experiencing painful periods, though not as painful as before the surgery. Still have pinching on my left side. Pelvic ultrasound reveals my bladder is distended. No lesions identified. My left ovary is slight larger the right. I go 2 months without a period, but experience cramps the entire time. I go to the doctor. Pregnancy tests are negative. My next period is very heavy with large clots.

27 years old: Cramping and pinching on left side continues. Periods are becoming a little more irregular. I have a period app and it’s always incorrect. I have a period that lasts 15 days. Period returns 2 weeks later. I attribute this to stress, as this is the year my dad passed away and my mom ended up in ICU for months after a stroke. I was in university at the time and was flying back home whenever I could to take care of them.

30 years old: I miss a period. I get some spotting the next month. Take a pregnancy test, negative. Spotting again in April. Another pregnancy test, also negative. I don’t get another full “normal” period until May. It was very painful. I passed a lot of clots and stringy tissue. I made an appt with the doctor and she suspects I may have been pregnant and was experiencing a miscarriage. Bloodwork is done. Nothing out of the ordinary.

34 years old: Develop a cyst near the opening of my vagina. I suspect it’s a Bartholin cyst. It’s very uncomfortable and painful to walk. I take hot baths and eventually goes away (so I think..). My periods are becoming more painful. I get cramping the week before they start. A stabbing, pinching pain usually on the left, very rarely on the right. A dull ache across my lower abdomen for the whole week prior and the week of my period. I try yoga poses to deal with the pain, stretches. I try muscle relaxants for the pain. These have stopped working. If I stay still the pain gets worse, as if it's trying to see if I am still here. If I move around, there is temporary relief until that twinge of pain because I breathed to much or went left instead of right. I get insomnia during my period, the pain keeps me up at night. I take quick shallow breaths and scare my fiance. I rock back and forth in the fetal position. Can't stop the tears.

35 years old: The cyst comes back. The pressure was so much I thought it was going to burst while I was sitting in my chair at work. The cyst is always there, and changes in size according to my cycle. Just before my period starts, it starts to swell. I can see it sometimes looks white/yellow (like a subcutaneous cyst would). There seems to be fluid in there. Sometimes it looks purple/blue...full of blood. It can be rock hard or squishy. The size of a tiny pea to a large grape. Nothing is draining from it. It was smooth and spherical in shape. Now (1 year later) it has changed shape and is irregular. My doctor sends me for an ultrasound. This cyst is not mentioned in my imaging, so "if it was a worry, it would be mentioned"- according to the doctor.

I experience a very uncomfortable week before a period. I used to never be bothered by bloating. Now I experience weeks when even my most stretchiest of pants are too small to fit around my abdomen. While brushing my teeth one night, I realize just how much my stomach is bloated out when I can’t get as close to the sink as I used to. I hit the counter with my belly and realize my whole lower abdomen is distended, visibly so. It’s tender and painful to touch. When I press on it, it makes so much squishy fluid noises. Like internal gas that can’t go anywhere.

Sex is now painful. It takes me a day and a bit to feel okay afterwards. I don’t like the cramps I get afterward. These cramps are deep and remind me of the cramps I get during my period. This is depressing me and makes me so upset because I miss sex and being with my fiance. I wish I did not feel pain with sex. I feel like my pain is sabotaging my relationship.

36 years old: My periods are getting worse each month. I am experiencing bowel issues and bladder pressure in the week leading up to my period and as well as throughout. When I sit down, it feels like my bladder will burst. When I stand up to switch chairs at work, I feel like my bladder is going to release and I will have an accident. Same sensation is felt in my bowels. Bowel movements are painful. I went from having a bowel movement every morning at the same time, regular, no problems. Now it is work. I feel like I am constipated. I have to take a stool in the bathroom with me to get in a comfortable position. I try not to strain but I can’t get it out. Sometimes I have to lean forward or backward to encourage a bowel movement. My movements are small. A grape-size poop feels a lot bigger. After I am done a bowel movement, a few hours later I feel like I have more in me. When I try to have another bowel movement I may pass the smallest piece of poop, or mucus. This used to surprise me, how something so small could feel so big. Now I just expect this is my “normal”. I am so bloated, sometimes it is just SO much air I have to pass. I always go to the bathroom to pass gas because I cannot tell if this is just gas I am feeling or if there is poop too: the bloating and pressure in my lower abdomen is too much! I don’t chew gum, so I have no idea why I have so much air and gas.

I introduce more fiber into my diet and start taking probiotics. I am not sure if they are making any difference. I increase my daily water intake. I still feel horrible. When I have bladder pressure, I will try peeing. I can’t empty my bladder all the way. I’ve had urine tests. No UTIS. No infections. No clue. It doesn’t burn when it comes out, it just is painful to start peeing because it feels like the pressure in my abdomen is kinking my urethra. Sometimes I have to press on my bladder (which hurts to do) in order to pee.

The doctor sends me for an ultrasound of my abdomen, and pelvis (&transvaginal). My abdomen is normal. Nothing is wrong in there. There is a 15ml cyst in my right ovary. They see a trace of free fluid in the pelvis.

The doctor ordered blood work. Nothing out of the ordinary there.

The doctor sends me to a gynecologist. I hear good things about her. I am excited….. and disappointed when I learn this just a phone consultation (because of Covid). I fill out the intake form. And spend 10 minutes trying to explain to her why I don’t want to go back on birth control. My mom has lupus. She had her first heart attack at the age of 29 and she has had multiple strokes. My doctor monitors me for lupus (I get bloodwork every year to check) because I have some of the same health issues my mom had before her diagnosis. I am over the age of 30 (I’m 36 now). I do not want the added risk of stroke by taking birth control over the age of 30… especially with my mom’s medical history. This gynecologist wouldn’t listen to me.

I ask my doctor for a referral to a different gynecologist. I really hope Tuesday goes well and I leave feeling like I have accomplished something.

I do not have an official dx of endometriosis, but after reading others’ experiences and remembering how my old doctor mentioned this before, I feel that I am on the right track.

Has anyone had any similar experiences? Particularly the bowel/bladder pressure issues?

Or had a previous laparoscopy to remove adhesions, and then years later began experiencing symptoms again?

Thank you for reading.

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