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Laparoscopic Supracervical Hysterectomy for heavy bleeding and cysts

From the Laparoscopic Hysterectomy Stories Articles List

Hello fellow HysterSisters!

I'm a few years out of having my hysterectomy, and while I was nearly 32 when the LSH was performed, I'm finding I'm coming across more women who are faced with the decision. I've directed many women to the forums and hystersisters for information, because it was very helpful for me. I've recently realized that while I'm very comfortable sharing information and answering questions, I've never shared my story here. So here it is! Forgive me, I'm going way back, because I think it's all relevant.

I started my period when I was nearly 12. It was painful. In fact it was always painful. Doctors never believed me when I would say how bad it was. If it came early and I wasn't prepared I would go home from school sick, because I would literally throw up because it hurt so bad. At some point in high school I finally saw an OBGYN. They said that the pain would go away and if I chose to have children it would go away after childbirth. Telling a 16 year old that really isn't helpful. But I sucked it up, and when ibuprofen stopped working I switched to Aleve. Throughout college it seemed to get worse, and I continued to suck it up. All OBGYN visits were incredibly painful. The inspection of the uterus and the PAP smear always put me out of school or work for the day. I would cry and scream on the table - my behind never touched the table because I couldn't relax.

Then at 22 I had my first large cyst rupture. It was also my first experience with Vicodin, as well as my last. Ever been on pain pills through an earthquake? Yea, not so fun. From there the cysts seem to grow and burst nearly monthly. This is when the birth control started. They felt it would help with the pain, the cysts and any abnormal bleeding. At this time, the periods were very consistent and while they were insanely painful, it was 4 days a month. The first the pain would start (and the Aleve) then the first flow day I'd pass a few clots, followed by 2 lighter days. I felt I couldn't complain much - as many ladies lasted much longer. I started questioning doctors as they felt switching birth controls was the answer. I just hadn't found my magic combination to my body. That was horrible. Pain/Cysts/hormonal changes lead to lengthy periods, and horrible experiences with gushing etc. I started switching doctors to find answers. First I just went for other opinions within the practice, then I realized the practice had the same train of thought. I went outside the practice. I probably saw a good half dozen. Questioning my genetics ( I have a rare seizure disorder) to saying I'd outgrown it. One day crying to a friend she said see mine. He's rated the doctor doctors seen and he's so patient. He actually delivered her, and both her and her mom see him. SOLD. What smart ladies can see the same doctor and keep going back 25 plus years later?

I started seeing him, in California. I was going a few times a week and he started me on Deppo (the shot). LOVED it. Finally my body was working it self out, but the pain was horrendous. And we couldn't stop my cysts. He said let me go in, clean it up, and see if I can see something that the tests/doctors can't see in the ultrasounds, MRI/CT, etc. I said sure, but while you are in there can you perform a tubal ligation, because due to the disorder, I didn't want to have children. He went in, tied the tubes, removed numerous cysts on my ovaries and said it looked like I may have mild endometriosis. But it was only the red/blood on the uterus there really weren't formations. So we chose to watch it, and no more birth control because it wasn't working or needed.

A year later and a large cyst was forming as well as a ton of pain. He gave me prescription strength Aleve and Tylenol 3. He went in again, and did the same thing, removed the cyst and performed a clean up. At that time we decided that it may be possible that since my cysts were not reducing, I may just have to go in for surgery for clean up every once in a while, because he was dead set against removing ovaries until it was extreme.

Almost a year later from that I had moved to Arizona, and had seen 3 OBGYNs who didn't want to take me seriously when I said I want it ALL out. I was done. I was dealing with this since I was 12, and I'm done. The 3rd OBGYN I saw was a fertility specialist in attempt to better understand the cysts and flow. Since he had a better understanding of the working and not just wanting to deliver babies I was more comfortable. He put me on a different birth control stating that this had had better options and results, then let's wait 3 months and see what happens then. 1 month in I was admitted to the hospital for bilateral Pulmonary Emboli. I spent 9 days in the hospital. The cysts were slowing down, but due to the PE I was not allowed to take BC anymore. After this I stopped all medications that were not necessary. I didn't know what caused it, and was having allergy issues on the side (not related, won't go on a tangent here). After freaking out the OBGYN with the PE, I decided that it was worth traveling back to CA to see the doctor I loved and listened to me. The pain continued and eventually didn't stop through the month. Bleeding/Spotting also was through the month.

8 months later, I went back in in extreme pain in one side. Multiple cysts and heavy bleeding. The works. He went in found my bowel attached to the remaining fallopian tube by scar tissue. That was the pain on one side. He performed clean up, and did a D&C to give me a "fresh start" knowing how fed up I was. He said he didn't want to remove anything until he was sure what the problem was. He said he could remove the ovaries, but if that's not the problem he didn't want to put me on hormones especially wit the PE history, even though I don't have any reasons for clotting. I went back multiple times over a year, knowing the pain was my uterus.

By this time I understood where the pain was coming from and the "cramping" I was feeling verses the cyst rupture/absorption pain. I was "cramping" and spotting through out the month, nearly non stop. Almost enough to call it bleeding. After having a large amount of pain and ending up in the ER (this wasn't the first time I probably went bi monthly- by this time I think they thought I needed a pain killer fix - luckily I seemed to always have a cyst rupture, so they didn't question me so much - but they didn't investigate) I did see a doctor at Mayo Clinic who said I needed a hysterectomy. A full hysterectomy. He saw me for 5 minutes and decided that. He said it could be a cyst issue, endometriosis, or something rare called adenomyosis. I pretty much gave him the finger and said forget it. How can you know me all of a 5 minute consult and want to remove everything. You want me to trust you to knock me out and remove everything. He didn't even request my very large file from my trusted doc.

I made an appointment and went back to CA to my trusted doc with the stack of records - hospital and Mayo. I was crying and annoyed. I was in extreme pain every day of every month. If I wasn't bleeding I was spotting. He reviewed the files, had both ultra sounds, performed the exam. He said that my cervix was fine and healthy and my ovaries were okay. He said they were going to continue to produce cysts, but we can't control that. He asked me if I felt like they should be removed. I said no, not really. I wanted to not take hormone replacements and I was SURE the problem was my uterus. I knew where the pain was coming from. I said I want it out. I never liked it, I've hated it since the 6th grade and I was done with it. He said he'd go in and take it out and clean up everything else. He wanted to make sure I was sure. I said hell yes. We scheduled it for a few weeks later letting me take care of a few things, clear it with insurance, get blood work, schedule hotels, and clear the time with work. I scheduled the laparoscopic supracervical hysterectomy.

July 11, 2012 I was freed of my uterus. I will never forget. I was calm going in, and in a ton of pain. I was ready. I was calm, I was excited to be relieved from the pain. I went in, got the IV set up, the relaxer from the anesthesiologist, moved to the surgical table with the lights. Then my OBGYN took my hand and they had me count backwards and that's all I remember until I was awoken by the most horrible roommate ever. Complaining about how she wanted subway but she couldn't because of surgery being rescheduled because she kept eating... They moved me to another room, a few hours later I was awake and ready to go home, but couldn't because the doctor had already left to clear me. That's the drawback of having surgery at the end of the day. It was the first time I woke up and wasn't in pain ever. It wasn't because I was on pain killers either, I was refusing most of the heavy stuff because I wanted to go home. Honestly the pain I was feeling was the incision and some burning on the inside. I was in more pain coming in for surgery then leaving from surgery. To this day that thought brings tears to my eyes. All those years of pain, and it was over so quickly. When the doctor came in to release me in the morning I was sitting up and If I could move to hug him I would have. I went back and spent 2 nights in a nearby hotel to be able to do the post op visit a few days later.

The final diagnosis. I had adenomyosis - the uterine wall cracks were creating the "endometriosis" on the outside of my uterus and covering my ovaries. Cysts were removed, scar tissue was cleaned up. He took multiple pictures, and they weren't pretty. It did take a little longer than he had estimated to cut each strip out from my uterus and remove it, as well as the clean up and look around.

My advice for LSH:
-Trust your instincts and be persistent. If a hysterectomy isn't in your comfort zone, it's okay, but know it.
-Get multiple opinions. If I had accepting that getting preggers was the answer, I probably would have been a mess as I can assume trying to have a baby in a bad uterus isn't ideal. I probably would have lost a few babies.
-Find a doctor you trust and that trusts you. Even if you know the result and what you want, you need to have one (maybe that won't hold your hand going under) but one that you know will make the best choices when you need them to.
-Make sure you have your will and all medical decisions documented and on file. Always prepare for the worst case. You likely will not need them, but relying on your loved ones to make tough calls when you are not well or drugged and they are emotional can be tough. Make your power of attorney someone you trust and can make level headed decisions in times of panic or emotional distress.
- Find out how soon you can have your catheter removed and be insistent. Even if it means relying on a family member to push the nurse. I had an uneducated nurse who refused to take it out and had to ask for her supervisor, who removed it. I'm a more pushy/aggressive person - even doped up, so if you aren't, make sure someone around you is.
-know when you can eat. I was cleared, ordered a meal and that nurse(above) cancelled my meal. She clearly thought my surgery was more invasive than it was. Broth for breakfast when you haven't eaten in 24 hours, is NOT ideal.
-Schedule your surgery early, so you can recover somewhere more comfortable. Sleeping and being poked while you just want to relax and your pillows suck and you are sleeping on plastic, not fun.
-Find out what you need to be released, (passing gas, eating, not taking morphine for 6 hours -etc) this way you can create your own goals and know how much of it you can take. Recovering at home is so much easier.
-If you can, recover in a hotel. Sounds strange, but think about it. The bathroom is close. The TV is in front of you. The beds aren't uncomfortable. You have no need to want to throw in a load of laundry or do the dishes. You HAVE to relax. Luckily we had hotel points from using credit cards and travel.
-Have them be sure to clean up the adhesive pad very well. It's this sticky pad that they drape over you and work during surgery. They need to be sure to use the special cleanser to clean it up. I had a reaction of little red itch dots a few days later, and it was too late to do anything about other than clean it up and topical relief. A good cleanse will avoid this.
-Read the posts for post follow ups to ask questions about how long spotting should happen, what you need post op and get them. Don't open them if you can return them. Also keep in mind what you like and use on a regular basis (entertainment - movies/books). Everything from food/soda/water - get that ready so you won't have to later. I also took it to get more sun dresses a size larger to have room for my large post op belly, some gauze and surgical tape. This isn't on the list, but I didn't like things rubbing against the surgical strips so even when i was back in things around my waist (skirts) I still wore this. Please be sure to get the non stick and the gentle surgical adhesive to avoid sensitive red tape skin when it's off. It gets raw without air.

Lastly. My LSH was the best decision I ever made. I love not having a period that haunted me. I knew I wouldn't give birth to kids, so my uterus and I were not emotionally attached. I had to go through several years to get here, but while I probably would have moved it up a few years, I likely wouldn't have my ovaries either.



SHARING IS CARING

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