Marsupialization: Positive experience

Hi all. I just wanted to share a positive experience with a recent marsupialization. Before my surgery, I read many of the stories in this forum. Although I did find some useful advice, I was also very frightened by some of the stories that were shared. I promised myself that if I had a positive experience that I would come back and share it here. I think it’s important to remember that when people do have positive experiences, we often don’t run to the Internet to share them. We are more likely to do so when we are having a negative experience and are looking for answers that our doctors are not giving us. I promised myself I wouldn’t forget how afraid I was at one point while I was Googling this, and how badly I needed to hear a success story. Below I described my history, surgical experience, and closing thoughts.

HISTORY

I am 32 years old. I have had two cysts prior to this third one that was recently marsupialized. It's worth noting that none of mine ever abscessed. I believe my first was at the age of 25; hot compresses were enough to resolve this one on its own in about 6 weeks or so. I had another one when I was 29 or 30; this one resolved within a week or so on its own. The most recent one I had was very stubborn. I had it for about a year. Although it did not abscess, it did interfere with my life tremendously. It would become uncomfortable and swollen after sex, working out and sometimes even just around my period. I lived in constant fear that it would abscess. It absolutely destroyed the experience of physical intimacy between my partner and I. I was miserable.

I saw a few different gynecologists. A couple mentioned that they could aspirate it with a needle, but I knew from reading that this was not a recommended treatment as the cyst will often return. This is because needle aspiration does not create a new opening. Although aspirating can remove the fluid, it is very likely that more fluid will just build up again after as the gland is still blocked. Incision and drainage runs the same risks. Some advised there was nothing they could do because it was too small. (Mine fluctuated in size, but ranged from marble sized to the size of a walnut.) Some mentioned that if it were bigger, they could use a word catheter. They told me to wait until it abscessed, which sounded awful. Some mentioned marsupialization, but they made it sound like a very invasive and frightening procedure.

Finally, I saw an excellent doctor. She advised that because it was small and fluctuant, she did not believe it would be possible to catheterize. She referred me to a colleague - a urogynecologist that frequently performs surgery. This urogynecologist recommended marsupialization.

I really think a key to care for this difficult condition is to find a doctor you really trust. If you are able, seek out a doctor that listens to you, answers all of your questions, and takes your pain, fear and sadness seriously. I am so glad I kept looking for such a doctor. I had a lot of questions, and she answered them all. Below are a few I had, and how she responded.

Does it work? For many, yes. For others, it works for a period of time, and then stops working. Unfortunately, there are no guarantees. If you are as miserable as I was, you want the chance to be better rather, even if it's not absolute.

What if it returns? For people with recurrent cysts and abscesses, for whom marsupialization does not work, gland excision is an option. You really want a skilled surgeon that you trust for this. I am told it can be very successful when performed well.

What about scar tissue? Scar tissue is possible. It is more likely for women that have more melanin, as there is a connection between melanin and keloids/scarring. I was told that if it is performed with skill, the risk is minimal. I was also told that people with issues related to scarring do have surgical options. There are procedures that can be done to "break up" scar tissue, although they are also not perfectly guaranteed. However, if you are someone that has this issue, I wanted to mention there are options out there.

What does it look like after? After the area heals, you will be left with a small hole inside. This is a good thing! You now have an additional channel for the gland to drain through. She mentioned that for some people, the hole can close over time. If this happens, the cysts can return. So remember, even if the thought of this new hole is scary, it is what you want. It will be internal, and it will not be visible from outside.

Should I try to look at before it heals? Definitely not. She said this is upsetting for most patients. She said if I am curious, I could look after my final follow-up.

MY EXPERIENCE:

My procedure was three weeks ago. It was done as a day surgery in a hospital. I was under general anesthesia. I was given IV antibiotics during, but was not prescribed any after. I did not have an abscess, so I am not sure if this would be different if you had an abscess. I was prescribed a lose dose of an opiod, but I never needed it. I did have pain, but it was manageable. I took the 600mg of ibuprofen every 6 hours around the clock for the first 3-4 days. After that, I took it as needed. It felt sore, and occasionally the area would "cramp" unexpectedly. The stitches can feel a bit itchy too, sometimes. All in all, uncomfortable but manageable. Definitely not excruciating or traumatic for me.

I also took a stool softener with LOTS of water in the days immediately after, and I highly recommend it. General anesthesia often causes constipation. Not only is this uncomfortable, but when it's finally time to poop, it can be painful. If you have to strain while passing a bowel movement, you run the risk of tearing the stitches. I didn't poop until the morning of the third day. It certainly wasn't the most comfortable experience, but there was no issue with the stitches.

I am able to work from home, and I was grateful for that. By day five or six, the pain was not too noticeable unless I was walking around. I found sitting tended to aggravate it. If you have to sit, a donut pillow is recommended. Lying down was fine, and slowly walking around my apartment was also fine. By day ten, I was comfortable walking down the block to the store. Little by little, I increased my movement. I think healing is highly individual; if you feel better sooner, great! I took a little longer to move around readily. My doctor thought I would be walking with ease by a week, but I needed a little more time. Not everyone has the ability to take a lot of time off from work, but if you can, consider that your healing may not look exactly like the next person.

At my two week follow up, I took the stairs to my doctor's third floor office instead of the elevator. I moved slowly but I got there. She said light movement, if you can tolerate it, encourages blood flow and healing. She said the area seemed to be healing well. There was no infection. I was a little concerned that the area still seemed a little swollen, but she said this isn't unusual after surgery. The cyst is gone, but the area still isn't totally flat like the other side. The best way to explain it is that its a bit puffy. At three weeks, it is still like this. She was not worried by this.

She advised that clitoral stimulation at this point is fine, but that I should wait a full six weeks before I have intercourse. Something unexpected for me was that even after the pain from the incision faded, I have had some muscle pain in the area. Not only near the site of the incision, but also in the general area of my groin. She mentioned that this is also normal; we tense when we feel pain. We also sometimes tense to "brace" ourselves if we are expecting pain. Finally, we may also hold our pelvises in unusual ways to prevent pain.

I will see her again at the six week mark just to check in and see that the stitches have dissolved and all is well. She said if I still had this muscle pain at the follow up, then she would recommend pelvic physical therapy. (Yup, it's a thing!) Not all insurance plans are great at covering PT (mine isn't) but it's worth investigating. I would probably try to pull together the money to have a session or two and pay out of pocket if I need it.

CLOSING THOUGHTS/ADVICE

I have no idea if I will have scarring and pain when this is all said and done. My doctor is optimistic that I will not, based on how it looks. I also don't know if I will be one of the people for whom this surgery offers longterm relief. However, I strongly feel this was the right choice for me. I didn't want to wait years for this to maybe go away, maybe abscess, maybe come back. I am happy I took control and did something that not only got rid of the cyst, but also gave me the best possible chance at it not returning. None of the answers are perfect, but for me, this was the best choice.

If it does return, I will not resign myself to indefinite agony. I will most likely elect to have the excision. Although it is intimidating, I am told a skilled, confident surgeon can perform them to a very good result. What my surgeon said that really stayed with me is: "You do not have to live in pain." It's simple, but for me, I felt a weight lifted.

I cannot stress enough how important finding a good doctor is. Urogynecologists and gynecological oncologists are more specialized than your average GYN. You can certainly find a skilled GYN that is familiar with this procedure, but many GYNs are only trained in the word catheter and incision and drainage. If you can, seek out a specialist. Urogyns and gyn-oncologists have several more years of training than OB-GYNs and are skilled in surgery. My surgeon was honest about the risks and possible outcomes, but also confident that she could do the procedure well. She also never made me feel bad about being nervous or having questions.

These cysts are deeply frustrating, but please don't lose hope. Do not let anyone tell you that pain is inevitable for you, or that you have to suffer your whole life with this. You don't. You have options. Find a good doctor that is familiar with them. I had to see many doctors before I found this one. I'm so glad I didn't give up. I also wish I could go back in time and tell myself that this surgery was no big deal. Yes, some pain, but nothing ibuprofen couldn't handle.

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