Happy Birthday Lefty!

5 years ago I took a test that saved my ovary!

I celebrate that day as a new birthday for my ovary ever since.

Today is my left ovaries birthday.

I have had several new cycles with her and she has not decided to grow anything new!

I am thankful for that 

Here is to lefty

formally Quasimodo

I am looking to celebrate many more healthy birthdays with you ⭐

Beer and Cowgirl boots

It is that time of year again.

Check in on my uterus and ovaries, 

make sure they don't have any new hitchhikers.

I travel to a nearby town to check into the local hospital to 

have my pelvic ultrasounds.

I have found a great tech, that tells me what she sees before I get my results.

I take her observations as a no need to panic foreshadowing.

I spent too many years worrying after the exam whilst waiting for results.

So I found a person who will tell me if she see changes or give me a heads up.

She is awesome that way and has a similar fibroid and cyst situation.

We are in a sisterhood like that.

She offers respect and compassion that I seek on this crazy reproductive journey.

Today she told me a story of a client that came in last week for a pelvic ultrasound:

A woman came in kind of drunk she said....

she was wearing a skirt and cowgirl boots.

She told the tech that she was a little drunk that she choose to drink some beers 

for her 30oz of clear fluid to prep for the pelvic ultrasound.

(I giggled and wondered why I never had thought of that, that makes for a personal party out of a sucky medical exam.)

After the external ultrasound, she emptied her bladder and hoped back onto the exam table in a hospital gown and her boots.

The tech thought, OK I guess this is how she rolls.

As she was performing the internal portion of the exam she proclaims to the tech:

"you know my husband always wants me to keep my boots on, and I always say no....

 But for you I kept them on! "

Ahhhh the clarity of alcohol

and a vaginal probe

Cycles

The proceeds from this t-shirt help provide menstrual hygiene kits to people experiencing homelessness

I only get my period four times a year now.

It is part of the agreed plan to control my endometriosis, fibroids and cysts. 

It has been working well, and retarding growth on the current fibroids and any creation of new ones.

It has also allowed me to keep my uterus instead of having the suggested hysterectomy.

At first I thought it was like being neutered; taking away something so sacred as a monthly cycle.  The monthly pain left me unable to stand upright, or eat or sleep, so the idea became a welcome retreat from pain and in many ways a space to grieve my lost fertility.

I had to walk away from my efforts twice in 8 years of trying to make a family. 

When I first went off the monthly pill to dive into the pool of trying, I was almost immediately faced with a wall of pain and only after half a year was I able to advocate for further testing which first revealed my fibroids and the sudden growth had me at an oncologist. 

Back on the pill to shrink them and try to give me a window to try to get pregnant again.

The second dive into the pool had me in the ER and multiple trips to the doctor to find answers to the miscarriages. Suddenly 8 years passed and it was too much loss and too much pain to live.

I went back onto the pill after my removal of a large chocolate cyst, and an ovarian cancer scare;

that confirmed my stage 4 endo that had head-locked my ovary behind my uterus, a septum in my uterus and calcified fibroids.

The road was shut.

I grieved and celebrated this information at the same time.

I did nothing wrong in my efforts to get pregnant, but my body that I had lovingly cared, for had decided that no child shall survive in me.

Now 5 years later, I am facing a new kind of knowledge.

My periods which only come quarterly,  will eventually stop coming all together.

I am prepared to grieve that as well.

a bitter sweet party

I have my period now, I have always been a full moon bleeder.

I guess I am a druid that way, an earthy girl, a wolf woman.

I can now not have to decide if the pain is bad enough to need to go to the ER, 

instead I can sit on the couch or sleep away the mood and aches.

Still honoring the need to take care of this body.

My period arrived later than normal this cycle, and for the first time in a LONG time, 

my mind did not go to the "maybe I'm pregnant" thought...

in fact it never even entered my mind.

Instead I thought, soon there will be no more.

and the results say...

 

After dealing with a mountain of nerves in the anticipation and an exploding stomach
(from said nerves)

I went and got my (self advocated) 6.5 month ultrasound recheck post surgery.

I travel to another nearby town to check into a hospital and have the most rockstar tech, Ms. Fabulous, perform my test. She is a transplant to the country and use to be a high risk pregnancy nurse. She is crazy compassionate and I have been talking with her for so many years now, we have shared portions of our stories while she is "wanding" me. She is also a teaching tech, so she often has other women techs with her. Yesterday was no exception...well yesterday was exceptional. I don't care for the exam, I am sure no one does, but after about 20 of them they don't bother me. I do not like the preparation bladder expansion portion, as I need to drive half an hour to get to the hospital, so the drive is me hoping that I have consumed enough water to blow up my bladder but no so much that I piss myself when I arrive.

Ms. Fabulous, got me into the room and introduced me to the tech, asked why I was there-you know the general stuff and when I told her about the surgery and I had two really bad cycles that scared me; I was self advocating and getting this exam to make sure nothing new was filling the space.

The tech looked at me and told me she had a cyst that took her ovary at 20, and that they did a c-section size surgery to remove the ovary. She was now past menopause and was glad to be done with the pain of endo. She told me she felt for me. (that was nice)

As Ms. Fabulous started the exam, we laughed chatted and she said she could see my "guys" which is what we call the fibroids (Ms Fabulous says cysts and fibroids are boys) then my uterus came on screen and I said "there is my girl!" She smiled and she typed uterus on the screen...the student asked if I had children...I said no, that is what my last 8 years was a quest for...but it didn't happen.

She was quiet. Then Ms Fabulous told me her mother called telling her that her daughter could not possibly be happy without children (Ms Fabulous doesn't have kids) we commiserated that parents often don't get it. I told her that my MIL told me she was disappointed we didn't adopt and that it was easy. The student piped in and said " UM no it is not, I adopted and it was one of the hardest longest things I did" I told her I told my MIL we couldn't bear another heartbreak.

We had formed a solidarity in that darkened room, with a wand up my vagina admiring my uterus that I have fought so hard to keep.

The very early unofficial reports are in, well according to my AMAZING ultrasound tech, she confirmed that my left ovary still has no additional growths.

She had a hard time finding my right ovary because

the endo has pulled it pretty far behind my uterus but she did.

She told me I had "small birth controlled ovaries", she said that she had to triple check as she has become so familiar with my endometrioma that she couldn't believe she was looking at my reproductive system.
I thanked her as always for sharing what she saw, that I never hold her to her word, as I know she is not suppose to say a thing...but I am so glad she does, because a weekend of worry is not healthy and she agrees. I left feeling strangely normal and unconcerned.
I had booked a massage to follow the ultrasound, as I knew I would be pretty worked up about it.
The masseuse, was OK, I am bruised today, which doesn't feel very relaxing...but I can float over that, as I am holding onto the potential good news for now.
The nurse from my doctors office should call with the results Monday or so and
say her famous first words to me:
"Hi honey it is me, well you have fibroids but you know that already...."
 

What Remains

 

 

I made it to Thanksgiving at The Viscounts and Viscountess's castle.

My brother (I'll call him The Earl)  showed off his well exercised domestic skills and cooked up some seriously yummy eats. Most of which I could only have a tablespoon of, as my tummy is still quite sensitive to food, in general...and seeing that I really wanted to sample lots of things that were not boiled potato, toast or matzo balls I was eager to have tablespoons of lots of things.

 

The Earls' in-laws were there and it is sad to say all the lady's from that side are also in some phase of struggling with fertility. One opted not to come, I totally understood and empathized. She has in the last year, had multiple IVF rounds and even egg donations all of which came back with no implantation's. The other Sister, was there last night and shared with me that she had to put the breaks on the "games", after $12,000 of heartbreak.

She didn't know I had, had surgery (thanks to the Countess, the Earls wife, keeping mum at my request) and asked what endometriosis was as she had it too but didn't know what it was. I spent some time explaining what I knew about it and she sort of had a light go off in her head.  She told me that she wasn't a candidate for IVF as she was told there were not enough eggs left, and she was too heartbroken to continue. I hugged her and told her I was so sorry....she gazed at her husband playing with our nephew. I could feel what she was feeling, see what she was seeing and I told her sadly that even after all these years, for myself...the pain is still there, but the way I respond to it has changed. She was sort of in shock. I leaned over and whispered to her

" this is not your fault, you did nothing wrong"

She started to cry, and I realized I could offer no other condolence but that for her.

 

After we made it home, The Barren and I settled in for some post tryptophan television watching.

We watched the end of 50/50...we had seen it before and knew what we were in for, but I needed a scapegoat for shedding some tears.

As I let some go he asked me what I was thinking about.

I told him that although I am cancer free and overjoyed at that, I am having a hard time forgetting about what was found and that it is still heartbreaking.

He told me he understood and allowed me to continue to cry.

*

The Barreness has filled my abdomen with scar tissue.

My bladder is fused to my uterus and a fibroid is tucked in the middle of them.

My tubes are not in the right place; they have been pulled and twisted under and below themselves.

I had so much scar tissue she was only able to remove a little endometriosis.

A piece that was trying to attach to my bowel and maybe bits here and there.

She told my beloved that when things get too uncomfortable for me, that a complete hysterectomy was all that was left. She would have to perform this abdominally, as the surrounding organs and space needed exceeded laproscopic conditions.

 

So today the bruises are yellowing, with green undertones...I am able to walk and sit up strait.

I am still swollen, I am slow to the uptake in some ways...but aside from some surface sensitivity on the incisions I am feeling more like me, except a little weepy.

 

Did I say too much

I wondered if I said too much with the last post, pissed you all off...

It came from my heart...pure concern and fear.

I hope that you know that.

 

When The Barren and I  were in our darkest hours, I saw many many doctors, like many of you have, and what I heard from them were things that would make it easier for them to treat me.

Fixes that would reduce my questions and discomfort. Easy outs.

*

My gyno told me over a phonecall, when I was asking for a renewal on my pain meds: 

" maybe you should just have a hysterectomy, sweetie, it will make it so much easier for you"

*

I was told by a doctor in the ER after being admitted for a 8cm corpus luteum, that I should really consider having my ovaries removed because it would avoid problems like this.

*

I was told by an oncological gynecologist that I should consider having my cysts and fibroids removed, but it would most likely plummet my chances of conceiving, so get a good doctor to preform the surgery to hedge my bets.

*

I was told by a gyno that my pain was just me being extra sensitive to what a real period was like after being on the pill for so many years. 

*

I was told by an ultrasound tech that I didn't drink enough water and that I made her job very difficult, then she proceeded to berate me through the exam

*

After all of this, I went into my primary doctor because I had been exposed to strep through a friend that was a teacher, she looked at my chart and looked at me and said:

" I am surprised you even came into the office, this is not a pretty path, I am surprised you do not hate doctors by now"

 

I don't, I just don't like it when they give up on me

 

What I took away from many years of therapy is that:

 it was not MY FAULT that I wasn't able to have a baby.

It was alright that I chose to not walk the assumed path.

It was OK that I wanted to fight to keep my reproductive system.

I had a set of beliefs that made me feel like a person

and removing any of those would remove my belief in self worth.

 

Trying to get pregnant is hard for many of us, staying pregnant is hard for many of us and hearing that we are not pregnant over and over again is hard for many of us.

 

What I didn't like and what I see happening to others is that being turned around and women being left as a shell of themselves with the same results going in.

That scares me, I simply want to remind you that you are

whole, you are lovely and smart.

The games we play

The nurse called today with my results..."blablalalababab"

Yeas, same shit, new shit, but mostly I don't want to deal with it.

She ended the call with words I have heard before,

the brush off words, the, we don't know what else to do words...

the we don't want to have to constantly deal with this phrase

" You should really contact the OB/GYN department about this"

My response was one word: "Why?"

The Barreness has been busy: New cyst, new changes in the old one she has been tending

to for the last few years.

New count on the fibroids

Damn that bitch

It is all in a name

Around a table last night while enjoying food and conversation

 the topic of naming body parts came up.

I think my cupcakes really started the conversation... (they were a hit)

The men were talking about how they had named their girlfriends/wives/partners boobies...

and the names began.

Apparently hubby doesn't have a name for my boobies, I simply refer to them as "the girls"

The one that received the most laughter was "Cheech and Chong"

Then the conversation went onto testicles and butts and then

someone said "maybe I should name my ovaries!"

I was still laughing about something else and then my wheels all slammed to a stop....

Name my ovaries...what would I call the troublemakers?!

I mean I am so completely connected to them and they are constantly ruling my behavior and choices that it seems funny I haven't thought of it before and given them names by now.

Plus, this is totally feeding my inner 6th grader, who loved talking crass and thinking up funny names for testicles.

I came up with a name for one and hubby came up with the name for the other:

Quasimodo and plain Jane

Thankful

She plays coy....but we know her strength

First off I would like to thank the people who are now following my blog.

I have written here for years and in the last 6months I have been "discovered"....in fact the first time I realized I had "followers" I sat and stared at the screen and cried. I am not totally sure why. I think it was a combination of feeling found out, and feeling found.

So thank you ladies for your OVERWHELMINGLY kind words and love.

I do so feel it.

Yesterday was a stop at the NP, I wanted to talk about my plans, and desires for my body.

My primary care doc chose not to call to followup on the results of my MRI from December so I took control and booked an appt with the NP who treats me like a person and hears what I say.

So long crappy primary care doc...and thanks for nothing

When she came in I told her that I wanted to go over my latest results and find out what it really meant. She moved her chair all the way over to me and went thru each of the four lines of findings slowly. 

I pointed out that the cyst had shrunk between the ultrasound and the MRI (one week apart) and she mentioned that it might have ruptured a little after the ultrasound.

She also thinks that the "plucking" feeling I have is most likely Mittleschmerz or middle pain, the feeling of ovulation.

I told her I had not gone back onto the BC pills since I saw her last in Aug (for a stressed tummy) and that although she prescribed them to me, it took months to fill it and then pick it up from the pharmacy.

 It now resides in the cabinet of my bathroom....forgotten most of the time.

I told her the emotion of having to go back on them was too heavy.

I wanted to avoid them for as long as possible. I felt better off of them.

Seeing that I was still doing nothing to shrink the fibroids or the cysts, I was aware I was at risk for torsion and wanted to assess the real facts involved in making this decision.

I also told her I have been fed so many scare speeches, that if she could please simply tell me if I am acting risky. No need to stand in front of a dragon if I don't have to.

After a cyst gets about 3cm she likes to keep a close eye on it. Mine are around that size but I am feeling fine. She said she would prefer to treat me, then the cyst...if I feel fine, then we just keep an eye on the cyst and not go on the pill. I get to have ultrasounds every 4-6months instead.

She told me the warning signs of fallopian tube torsion and I understand the risk.

She told me to that I need to take vitamins and that we will assess my needs as they appear, she will do my annual and we will work together to keep me feeling good!

and that my penchant for chai or green tea is not a caffeine risk.

I felt like a person when I left, I felt normal and ok...I was so empowered that I came home and took a nap!

I awoke from a dream about two weeks ago telling my husband that I have just slain the devil...I slid a sword down its back. It fit into its spine like a sheath, it was not a triumphant feeling, but simply something I knew I could do.

He told me I was a bad-ass, and was glad I was sleeping next to him.

worm hole

I had dreams that I was turning into an earthworm, but couldn't finish the transition as I was stuck at some stage of the metamorphosis.

I called my doctors office yesterday as the waiting was too heavy to continue to carry.

My doctor was not in the office, so I asked to speak with the nurse that has been so so wonderful to talk to on the phone. She came thru again like a magic maker. She looked thru my doctors papers and called me back with results.

She told me that I had a cyst on my ovary, but more importantly, it was fluid filled, no solid mass and did not appear to be malignant or questionable.

Great news....it doesn't look cancerous.

My uterus is tilted and they could see my fibroids.

No new news, or new bad news.

I am back to looking at my prescription for the pill and seeing how I feel about filling it.

Why do I even bother

Waiting

I had my latest Ultrasound today. I drank 45 minutes before the exam and only drank 75% of what I was asked to. I have been on this ride before and I have made a fool of myself too many times before. So I am taking hold of my dignity and making the rules now.

The tech was running late (hence my master plan had already paid off) and I was still uncomfortable but able to talk and move without thinking I was going to loose it.

I made my appointment with a lady and doing so had me wait an extra few days...as there is only a female tech for half the week and a male tech the other half.

The tech was kind and spoke softly and used my name over and over, made me feel like I was more then an uterus and bladder. She pointed things out things of interest along the trip and took a fair bit of time looking around. In her previous career she was a midwife that specialized in high risk pregnancy and was kind and kept saying she was sorry. It made the experience softer, more honest.

She said she had to leave that job because it was so heartbreaking.

" It is always the nicest people it happens to"

At one point on the exam, she turned on the sound and I heard a heartbeat....I wondered what it was like to hear a second heartbeat...beating even faster then your own.

She looked at me and said softly and kindly..."that is your heart."

It made me stop, it made me feel that deep deep hole in my heart.

It made me ache.

The results are already in and the call from the nurse was sweet.

My doctor had already lost the notes on me...and had already suggested I see OB/GYN for further "assistance in getting pregnant"

I swear I need a new doc, bedside manner of a dinner plate.

I spent at least a half of an hour telling her exactly what I wanted noted on my chart.

So as to avoid this situation, this exact situation!

I still have a cyst on my left ovary, but its presence needs to be watched as it has been camped out there for several months and its size and contents have a risk of rupture.

My uterus is enlarged and my there are several fibroids noted of various degrees.

My shape might be bicornate, but it is hard to tell because of the locations of the fibroids.

So now I am here again...40 and looking at the risks and benefits of going back on the pill.

I need to close the salad bar, no more midnight snacking kids.

No kids