Sunday, March 18, 2018

Advice and opinions

MOST IMPORTANT:
IGNORE THE INTERNET

I read everything I could get my hands on concerning Bartholin cysts before my procedures.  Let me tell you, it is terrifying.  If you've stumbled upon this blog first, then please stop here.  I'll share with you everything I learned in a year and a half of research.  If you're here after reading all of the horror stories, let me assure you that there is hope.  Don't stress yourself by reading all of the nightmarish stuff out there.  I promised myself and God that if my surgery was a success, I would create this blog to give hope to all women suffering from these things.  That's why I'm here.  Hang in there.

Focus on the good.  Focus on healing.  It is possible for you.

People are more likely to go onto a forum to complain than they are to post about something good.  There's a lot of people out there talking about operations that failed, but there's also a fair number who insist that they worked.  The medical research says that both word catheters and marsupializations prevent recurrences in 85% or more of cysts.  My own doctor said that the cysts only come back 5-8% of the time.

Which brings me to my next piece of advice:
SEE A SPECIALIST

I was referred to a doctor who specializes in vaginal surgery, and I'm incredibly grateful for this.  Shop around.  Find the doctor who is best for you.  Do not let a general practitioner do this op.  At the very least, look for a gynecologist.  From what I've read online, it is my opinion that the more experienced the doctor, the less risk there is of the cyst coming back.  My doctor said that he has never had a patient come back with a cyst after marsupialization (knock on wood!).  The stories of cysts recurring seem to primarily come from women who did not see a specialist.  If your cyst is not infected, take the time to look for a doctor with plenty of experience with Bartholin cysts.  This will increase your chance of recovering without any incident <3

Other opinions:
Drainage is worth trying at least once.  Make sure that your doctor gives you a topical before injecting a local anesthetic.  You have the right to demand this.  If the drainage works, it is cheaper and saves you having to undergo a more invasive surgery.  If it doesn't, you've tried it.  Now you know.

The gender of the doctor doesn't matter.  I know some women are more comfortable with a female gynecologist.  I grew up getting health care at the VA, so I never really cared.  I expected my female doctor to be more understanding about my cyst.  She was the one who couldn't be bothered by me crying from pain, and who did not give me a topical.  My male doctor was infinitely more compassionate, made sure that I was numbed, and made sure I was unconscious for the surgery.
Whether you see a male or female shouldn't matter.  It is more important that you see a specialist.

Have someone go with you to any appointments.  It can be a significant other, a loved one, a friend - anyone you are comfortable with.  My boyfriend and I were long distance when I had my surgeries, so my mom was wonderful and went to all except my first with me.  If you are in pain, they can drive you.  They can help you remember what the doctor says.  They can ask questions you forget.  They can also hold your hand as you're afraid or in pain - and there is no shame if you experience either.  You don't have to go through this alone.  Please don't try to.

How did I treat my cyst?

For a year and a half, I didn't.

My cyst began as a small bump near my vagina.  I never had any pain or redness.  This is because it was never infected - it never developed into an abscess.

For over a year the cyst did not bother me.  I had it diagnosed in an urgent care, where they confirmed what my online research had already told me: I had a Bartholin cyst.  The nurse was uncomfortable with the idea of draining it.  She gave me antibiotics, but since I had no infection, nothing happened.

The cyst did not get in the way for me.  It got a little bigger around my periods, or if I was standing with clothing rubbing against it for long periods of time.  A hot bath in which I massaged the cyst would release a little fluid.  It varied in size, but never went below a small grape.

In November of 2017 I began using a menstrual cup.  During this time my cyst became an annoyance.  It still did not hurt, but it would get in the way when I tried to insert or remove my cup.

In December I became sexually active.  Sex increased the size of my cyst.  When it was swollen I noticed difficulties with my boyfriend penetrating me.  Once he was inside we were fine, but the swelling around my vagina made penetration difficult.  It was cumbersome, and not quite uncomfortable.
Again, sex increased the size of my cyst.  Hot baths would reduce it somewhat, but it swelled to the size of a large grape and would not reduce.

In February I went in to see a gynecologist to have it drained.  I had researched, and expected her to insert a catheter.
She.  Was.  Terrible.
I'm in the process of filing a medical complaint against her.
She did not inform me of any treatment options, and did not provide me with aftercare instructions.  She ignored my pain as she positioned the cyst.  She did not give me a topical to numb me before she inserted a needle with Lidocaine.  The injection was the worst pain I've ever been in.  I cried.  I punched the wall.  The doctor ignored me, instead talking with her nurse about car insurance.
The cyst was drained, nothing was inserted, and I was told to leave.
The cyst was back within a week and a half.

I made an appointment with a different gynecologist.  He was fantastic.  He explained treatment options to me and highly recommended a marsupialization.  He said it had the best success rates.  He promised that I would be unconscious for the procedure.  He was horrified by my treatment at the hands of the first doctor.
My cyst was too small to operate on then, about the size of a marble, but he said if it got any bigger he could do the surgery.
Unfortunately, my application to Medicaid was approved that day, and his office did not accept the plan I was assigned to.

I flew out to Chicago to see my boyfriend.  Whether it was the stress, the plane ride, or the sex, the cyst tripled in size overnight.  My boyfriend spent two hours holding me as I wept with exhaustion.  I needed the surgery.

I got a referral to a gynecologist who specialized in vaginal surgeries.  He examined me and suggested that we try draining the cyst again, hoping that the first doctor just hadn't done it properly.  He gave me a topical to numb me first, then injected a local anesthetic.  He made a larger incision and inserted gauze to try and give the wound time to heal.
That was Thursday.  Friday morning the gauze fell out.  I was swollen.  I tried to convince myself that the cyst was gone all weekend, but by Sunday I knew it was back.  I called Monday morning.  He was able to fit me in for marsupialization on Wednesday.

My marsupialization was done on March 14th.  I had had three surgeries performed on the cyst within a period of a month.  The operation was far less painful than either drainage had been.  Other posts will document my recovery.

Recovery: Week 1

On Wednesday I had a marsupialization of my Bartholin cyst.

I had read so many horror stories before I went in for the operation.  I was prepared to be in agony when I woke up.  Instead, I felt fine.  There was a slight discomfort, but nothing bad.  My recovery was far easier than I had anticipated, for which I am immensely grateful.

(My theory is that the majority of operations are done on Bartholin abscesses.  Because abscesses are already infected, recovery takes longer and is more painful.  Since my cyst was never infected, my recovery was relatively easy and painless.)

Here is the first week of my recovery:

Wednesday: Day 1
I was wheeled out to my car in a wheelchair, but was able to stand and sit with no problems.  The drive home was fine.  I took 500mg of Advil upon arriving home.  I was able to remain standing while my mom changed the sheets on my bed.  I was tired, but I felt alright.
(I continued to take pain pills every six hours or so.  I did Advil during the day, and Tylenol at night.  By Friday I wasn't in enough discomfort to really need the medicine, but I wanted it for the anti inflammatory purposes.)
I used the bathroom for the first time since the surgery.  There was slight discomfort with urination, but nothing near as bad as I was expecting.  I've had a fair number of UTIs in the past, and this hurt less than any of them.  The pad they had given me at the hospital was bled through, which I had expected.  I swapped to another pad I had gotten in preparation for the surgery.  I changed this every two hours or so, not because I bled through it, but to make sure that the area stayed clean.  The area was tender, so I dabbed with toilet paper instead of wiping.
I spent the rest of the night stretched out in bed or laying down, and was asleep around 9:30.  I didn't have much of an appetite, but started with juice, applesauce, and egg drop soup, then moved up to solid foods for dinner.
I ran a minor fever during the evening.  I spent most of the night feeling hot, but when I woke up around 4 and used the bathroom, I was chilled (my house's heater is broken).  The fever had broken.

Thursday: Day 2
I woke up around 4am, peed, and took a Tylenol.  Getting in and out of bed was uncomfortable, but not painful.  I was mostly worried about tearing my stitches.  I felt very cold for most of the day, but this seems to be normal after surgery.
I spent most of the day in bed, either propped up on pillows or laying down.  I took a nap in the afternoon - I wanted to let my body rest when I needed it.  I was able to shower in the morning and had no problems getting in or out of the tub.  I patted my vagina dry gently with a towel, then with toilet paper.  I stood in front of a space heater to dry my hair.  (I had not realized that they had shaved me for the surgery.  Half of my crotch has its usual long bush - the other is only about a quarter of an inch long.  This itches!  But it is so much easier to clean.)
Medication every six hours or so.  I was able to do a little gaming with my laptop, but spent most of the day on my smart phone.  Minimal discomfort.  Some itching, mostly from the pads, me sweating a lot, and the stitches.  Itching = healing, so I was alright with it.  I walked a little bit around the house as I felt up to it, but the anesthesia was still in my system and I got tired very quickly.
A note: My left shoulder and shoulder blade were both very tender.  This continued through Sunday, lessening a little every day.  I was knocked out before they positioned me for the surgery, so I believe that I laid in such a fashion that a nerve was pinched.  In addition, they forgot to remove one of the heart monitor pads from my ribs, and I slept on that side during the night.  Everything was very tender - my shoulder actually hurt more than my vagina during the entire recovery!
I was able to sleep on my back, on my left side, and on my right side during the night with little to no discomfort.  I was also able to poop on Thursday.  I had gotten apple and orange juice to help with this before the surgery, and was very glad that I did so.

Friday: Day 3
Friday I was able to spend some time sitting on the couch.  I spent about half the day there, and half the day in bed propped up.  Again, minimal pain.  No problems using the restroom.  My period started somewhat heavily on this day, which made life a little more difficult for me.  Due to itching around my vagina I took a shower in the morning, and then a short bath in the evening.  I had been advised to keep the area dry, but the nurse said I could take baths so long as I didn't soak in them.  The itching was entirely centered in the outer lips, not the inside of my vagina.  I believe it was due to the sweat, my wearing pads, and dryness (something I have struggled with on my birth control).  I swapped to panty liners this day instead of pads, which was a huge help.
I also went for a short walk in the neighborhood - just across the street and down two houses to the corner, but I was thrilled.  I moved slowly, but there was no pain.  I was, however, exhausted upon returning to the house.
I took a picture of my vagina after my shower so I could monitor its healing.  Some minor discoloration around the lips.  Both the inner and outer labia were swollen.  However, the swelling was entirely focused around the lip, not off to the side where my cyst had been.  I nearly wept with relief to see this.  Some bruising, but no redness.
I went to bed somewhat early again due to my continuing tiredness from my walk.

Saturday: Day 4
I played a lot of World of Warcraft on Saturday and Friday.  It greatly aided my recovery.  I was again able to sit on the couch for extended periods of time, or in a chair.  I was also able to play some Overwatch in the evening.  Very minor discomfort once or twice throughout the day.  I continued taking pain pills for the inflammation.  The itching had grown far worse, and a strong smell was in the folds of my vagina.  I took a bath just a few hours after my shower and cleaned as thoroughly as I could.  The smell was not fishy, nor anything I would associate with an infection, or I would have gone straight to the doctor.  It was also coming from the folds of my upper labia, close to my clit, instead of near the vaginal opening and incision.  I believe that it was due to a build up of smegma, and sweat/urine being trapped in my swollen folds of skin.  The bath greatly relieved the itching.  I also applied a little coconut oil, which I use every day since my birth control makes me super dry.  Coconut oil is anti inflammatory and helps fight infection in addition to moisturizing.  I did not go near my vaginal opening, but rubbed it gingerly on the lips.
Saturday's picture of my cooch was far less swollen on the inner lips, though the outer were still swollen.  The bruising had faded some.  Minimal progress, minimal difference, but I was pleased.  And it wasn't worse!
I spent the second half of the day without panty liners despite my spotting (not sure if this was from my birth control's effect on my period, or discharge from the wound).  This helped reduce itching and gave me room to breathe.  I changed underwear every few hours to stay clean.  I slept without panties - what a relief!
I walked twice as far on this day.  Again I was exhausted, but pleased.  I was able to stay up until midnight, which was later than previous days.

Sunday: Day 5
I woke up with a desperate need to poop and had my largest bowel movement since the surgery.  It was uncomfortable, but not painful.  I had been feeling somewhat bloated ever since the operation, but this got rid of that feeling.  I had been drinking juice every day and am grateful for that.  I'm not sure if my bleeding afterwards was from my period, or was discharge from my incision.
There was some minor itching, again in the folds of my labia, but nowhere near as bad as the day before.  The smell was present again.  I cleaned thoroughly in the shower.  This was the first day my inner lips weren't stuck together from swelling.  I was able to clean more thoroughly after I peed, and this got rid of the smell.  I really think it was just sweat, urine, and blood getting trapped and not wiped away well enough.
My cyst was on the right side, and my right lip is more swollen than the left.  However, the swelling feels soft, not hard like my cyst.  It is still focused upon the lip instead of to the side where the cyst was.  My pictures showed that my inner lips had hardly any swelling, and my outer ones were a little less.  The bruising seems completely faded.
I walked half again as far as I had on Saturday.  I was able to move at a faster pace than I had been.  And - no exhaustion!  I was a little tired, but was able to keep going and do school work when I arrived home instead of having to collapse on the couch.
No pain at all today, in vagina or in shoulder.

Monday: Day 6
Sleeping was more difficult due to sharp pains in my vagina.  It felt like the stitches, given that it was sharp little pinpricks of highly localized pain.
I walked further on this day, and was able to do a fair amount of school work.  However, come the evening I was in more pain than any other day.  It wasn't bad, maybe a five on my pain scale, but it was worrisome.  The swelling seemed more obvious on this day.  Shortly before bed I wound up with a dull ache near the Bartholin gland, in addition to the sharp pain inside near the incision.  My followup appointment was scheduled for Tuesday, so I took some pain meds and waited.

Tuesday: Day 7
Still more tender and swollen in the morning.  And my period started!  Oh, the joys of womanhood.  Let me tell you, having blood flowing heavy right after vaginal surgery is not fun.
Good news from my followup appointment!  It's healing really well.  No infection, and the stitches look good.  The gynecologist used a long lasting stitch, so he says I'll probably have them for another four weeks before they're dissolved fully.  He stuck a swap inside the incision, which was uncomfortable as hell but was not too painful.  The gland is draining great.  The swelling that I have is normal and will probably stick around for another few weeks.  He said that I should wait at least two weeks before trying sex, and if it's tender still, wait for another week.  I had already figured four weeks post op would be the soonest I would be healed enough for intercourse, so I'm comfortable waiting.  I would rather give my body time to heal fully...especially since the stitches will still be in!
I was given a copy of my operation report.  My cyst apparently measured 4cm x 4cm.  Only mucus inside, no infection.  The type of stitch I have is called Vicryl.  After the marsupialization the gland was irrigated, which is supposed to help clean out anything left inside.
The doctor also explained that it was normal for me to be hurting more now than I have been in previous days.  1. I'm doing more, so my body is being pushed further.  2. He injected the site with a long lasting anesthetic (and, according to the op notes, with epinephrine).  This has finally worn off, so I'm going to be more tender.
Overall I am very pleased.  If anyone is in southern Arizona, I cannot recommend Doctor Robert Samuelson enough.  Absolutely fantastic.

Wishing you all well!  I'll put up another post with my second week of recovery soon.