On Friday morning I had a Laparoscopic Hysterectomy and Bilateral Oophorectomy.
They took everything: my uterus, cervix, tubes, ovaries, everything.
We (my doctors, family, and I) have all known, basically since I went through puberty, that this is what it would come to. We had all hoped that other treatments would work, that symptoms would improve with age instead of worsen, and that if surgery was required that it would be several more years down the road, but that is not how things went.
Many women, more than I think people know, have severe pain with menstruation. I am one of those women. With a now confirmed diagnosis of endometriosis, plus pain-induced vomiting, menstruation-induced pancreatitis, 10/10 menstrual cramps, irregular bleeding, hormonal changes causing angioedema, and then pain, splitting, bleeding, and vomiting from intercourse, menstruation was hell. But it didn't stop there. I had Chronic Pelvic Pain. I had pain for no reason, my nerves and pain receptors were perforated and split and spread across my lower abdomen, so any pressure - outside or inside - caused excruciating pain. Belts, jeans, hands, seatbelts, anything pressed against my pelvis was awful. My pelvic muscles were so irritated that they became permanently contracted, which went as far as making me impenetrable. We even tried Botox injections to ease those cramped muscles, to no real avail. Then, add in inflammation in my intestines and that whole area was unmanageable.
So, early in puberty, I was put on continuous birth control pills. I was not allowed that hormonal break in order to have a period - my periods were effectively stopped. Each pill worked for a few months before either triggering pancreatitis or failing, resulting in even more intense breakthrough bleeding. I was placed on every birth control option available, until there were no more to try.
By this point, it was also discovered that I continually developed ovarian cysts, which would make my pelvic pain radiate up to my ribs. A PAP smear would cause an IBD flare, trigger my internal organ swelling, induce vomiting, trigger more muscle cramping, and put me out for several days. Intercourse became nearly impossible at times, and I had no reprieve.
Next to try were IUDs. Of course, with the early complications, the pain was so astronomical that they had to insert and remove IUDs under anesthesia in the hospital. My first IUD was inserted in 2010. This treatment managed to work for a little under 2 years before it began failing and I started to have breakthrough bleeding. In 2012, a replacement was supposed to be made, but miscommunications occurred, and the first IUD was not visible, so instead of replacing it, a second IUD was inserted. For sixth months, unknowingly, I had two IUDs in my uterus (which was unbearable). In 2013, an IUD was removed and I was subsequently placed on Lupron. The final IUD was found, randomly, on a ct scan the following year and was then removed.
Lupron is a medication that basically mimics menopause and has been said to cause a 'medicinal menopause'. It can also be a very dangerous drug. Apart from the severe side effects, it can also mimic Lupus, it can severely decrease bone health, and does not work flawlessly. It can cause intense nausea and vomiting, it can trigger sweating fits when the hormones start to break through, and without hormone replacement therapy, some doctors have even equated the menopausal symptoms to being similar to 'torture'. This medication is not recommended to be given for a longer period than 6-12 months, and should not be taken without hormone replacements. But, of course, I had breakthrough bleeding twice, so I was removed off of hormone add-backs. I spent just over 5 years on Lupron, almost half of that time without hormonal add-backs. The first instance of breakthrough bleeding was not severe, but the second instance not only triggered a serious Angioedema attack, but the bleeding lasted for 8 weeks, and I was almost required to undergo a blood transfusion.
The fact of the matter is that I needed to get off of Lupron. Not to mention that, apart from the Botox injections (which were injected into my orgasm muscle), these Lupron injections were the most painful of a list of injections I had previously experienced (flu shots, Methotrexate, Humira, Enbrel, Simponi, then an Epidural, Heparin, etc...)
So surgical intervention was recommended in 2014.
Now was the tricky part.
There are several reasons why this surgery was frightening in my case.
1. We needed to find a surgeon willing to perform the surgery (which proved to be tougher than expected).
2. I had had two previous abdominal surgeries which changed and shifted my internal organs.
3. A laparoscopy was deemed unsafe because of the new position of my organs - bowel cuts and other organ issues were of high risk.
4. My health is not good - I am very weak - so there was no guarantee that my body could handle another major surgery.
5. Removing my ovaries could reduce my life span and could diminish my bone health.
6. Any surgical errors could result in me having a permanent ostomy (which would be a shame since my Crohn's has been fairly well managed for the past 3 years or so).
7. The surgery itself is likely to cause an IBD flare.
8. Going under anesthesia can trigger severe HAE attacks.
9. I would need two tubes down my throat, one for breathing and one to put air into my stomach, and I am a high risk for airway swelling and obstruction.
10. I may need an epidural which has its own set of risks.
11. I am allergic to a few pain medications and to SEVERAL antibiotics, and I would need both post-op.
12. I have auto-immune disorders and a weakened immune system, which puts me at greater risk of contracting an infection.
13. There is no telling how much scar tissue is left from my previous surgeries.
14. I would (obviously) never be able to have children.
And, probably most importantly,
15. There is no guarantee that this surgery will even help. In fact, there is a moderate risk of the surgery resulting in even more pain.
But what were my choices?
Frankly, when we first discussed the idea of surgical intervention back when I was only 21 years old, I would have jumped at the opportunity. It could have saved me the stresses and complications of pills, IUDs, Lupron, and everything else, and could have been performed while I was stronger and healthier.
I was told at 17 I may never have children. By 21 I knew that my body could never handle actually bearing a child myself, so when I still thought I would have kids, I knew it would be through surrogacy or adoption.
Now, over the past few years, the painful reality of my situation has made things clear. My conditions are far too unstable to raise kids. So Ryan and I have decided, together, to focus on US... to focus on our relationship, our little life together, and our fur-baby. And we love our life together. And I would not give it up for anything - not even the chance to have children.
Yes it still hurts.
Yes I still tear up when I see pregnant ladies and my friends having these beautiful families, but I am happy and THIS is the best choice for me and our little life.
So - the surgery was scheduled.
I had an AMAZING surgeon agree to perform the surgery and we all held our breath.
I swear, every single episode of every show that I enjoy watching had a plot surrounding a pregnant woman for the entire week leading up to surgery. I bawled my eyes out every time.
Then - before surgery - it was suggested that I fill out a personal directive. Yes, it was only precautionary, but those questions are far more emotional that I had foreseen. I had to designate agents and loved ones who could make decisions on my behalf, as well as have the authority to make end-of-life decisions should the situation become that daunting and serious. I had to fill out a statement of what I value as life - and, in my case, although I know people may disagree, if there is any chance that there is a part of me still alive, I want to be kept on life support. I want to be here with the people I love. The entire directive was a very emotional process.
The morning of surgery arrived and I was as prepared as I could possibly be, however terrified.
Every little thing that did not go as planned stressed me out to the point of shaking and crying uncontrollably.
The nurse decided to try using a vein on my wrist for my IV - tears for twenty minutes. (She got it in one shot and was brilliant, but I still cried).
We got into the operating waiting room and a couple walked in - for a scheduled c-section - instant tears for another ten minutes.
The anesthetist was not sure whether to give me an epidural or a PCA. She decided on the epidural (which I had never experienced while awake) - tears.
My two anesthetists were in disagreement about using both tubes down my throat - tears. (It was decided to give me my Berinert - C1-INH plasma to help prevent HAE attacks - before surgery as a prophylactic measure). This decision I was VERY happy about.
By the time they rolled me into the OR, I was shaking uncontrollably and trying to hold back tears that were silently flowing down the sides of my face. No amount of warm blankets could calm the shaking and they eventually decided to give me a big dose of Diazepam after I was swarmed by about a dozen physicians.
Then my (incredible) surgeon came beside me, grabbed my arm, and said
"You know we've got you."
Omg the tears!!!!
I woke up on the 4th floor in a semi-private hospital room. Although I was basically in and out of consciousness for the remainder of the day, I found out that the surgery had been a complete success. Not only was there virtually NO scar tissue from previous surgeries, but they were able to remove everything, without incident, laparoscopically. Instead of a massive abdominal scar, I have five smaller incisions (no longer than an inch). This means that I do not have to deal with a Jackson-Pratt drain (I have had bad past experiences), recovery should be shorter and easier, risk of infection is significantly lower, risk of bleeding is significantly lower, and I can get back on my feet faster.
Plus - what was another awesome thing - is that I had asked for a picture. I had a photo taken of my large intestine after it had been removed, so I asked if they could take a similar picture after these organs were removed, and they obliged (even though they thought it was a very strange request).
Every hospital staff member that I dealt with was absolutely amazing. The food service staff, the cleaning staff, the nurses and their teams (along with the nurse who had to wash me), the doctors that visited, everyone was amazing. By the time I left the hospital to recover at home, I had been up to pee several times, was able to pass gas several times, I had eaten three meals, walked around the entire hospital ward a few times, and had a smile on my face.
There were small complications - the packing was extraordinarily painful (so it was removed early), the catheter kept getting kinked so it would not drain unless I got up and did a little moving/dancing every couple of hours, and I had a pretty frightening bloody nose that lasted almost 45 minutes after getting home. But we are all very happy with the result of this surgery.
And now we wait to see if my symptoms will improve. What I know FOR SURE is that:
- I will never need another PAP smear
- I will never have a surprise period
- I will never have a pregnancy scare
- I will never have another ovarian cyst
- I will never have to have another dose of Lupron, or birth control pill, or IUD
- I can get rid of most of my stash of tampons, pads, and other sanitary items
- My endometriosis is gone
- I will never have drastic or surprise female hormone changes resulting in severe HAE attacks
- I might even be able to reduce the severity and frequency of my hot flashes since I can try to go BACK on hormone replacement therapy.
- My nausea has already improved - maybe I can even start having showers again!
I am so happy that this surgery is finally done and over with and I am even happier that it went better than expected. I am still not out of the woods yet - I have a long road to recovery - but I am content and optimistic. There are MANY things that could be improved because of this surgery - and I am looking forward to finding out what they all are.
Below are the following pictures:
Pre-Op Appointment
Pre-Op Tummy Picture (2)
Morning of Surgery
Terrified but Optimistic
Smiley Face Hospital Slippers
Post-Op Photo Op
Posing with Flowers
Posing with Family Visitors
One Day Post-Op
Removed Organs ***GRAPHIC
Post-Op Tummy Photo
