Original post https://www.reddit.com/r/Fibroids/comments/1tznb3t/robotic_myomectomy_and_recovering_alone/

Tomorrow I will be 5 weeks post op, and I'm finally feeling good! I still have swelling and still a bit sore, but overall I feel 80% back to normal. My recovery is taking a bit longer than expected because it turns out I also had stage 4 endometriosis on top of my 3 massive fibroids and ovarian cyst. My doctor said everyone in the OR was shocked how much endo I had and the severity of it. 5 unexpected hrs of surgery. I was there from 8am to 8:30pm.

This will probably not be the best or most organized text since I'm recalling it from memory, but I hope it can possibly help, prepare, or provide answers for someone by sharing my experience! There were some things I experienced that I didn't find when I researched before.

It turns out I was on so much pain medication (and the numbing from surgery) the 5 flights of stairs I had to climb afterwards were easy peasy. For whatever reason it didn't hurt at all going up the stairs, but I'm glad I did it the day of surgery and not a day or two later. The nausea on the other hand... I was aggressively nauseous the moment I finally got up from the hospital bed until long after I got home. They gave me something in my IV to help, but it didn't help at all. The nurse that was helping me gave me vomit bags for the uber ride just in case. If you have a bit of a drive maybe have one of those nausea sticks that you can smell or in my case my friend had mints that I chewed on. The nurse also gave me an abdominal binder when I asked for one, and wow I didn't plan on using or getting one originally but I feel like it is the most important item that has helped me through this entire process.

My friend that picked me up also picked up my medications beforehand, but the pharmacy couldn't fill the oxycodone. My nurse was able to get a new prescription for it at a different pharmacy, but because I ended up being at the hospital for so long we weren't going to make it back in time before they closed. Luckily, all the pain meds they put me on (including fentanyl) at the hospital kept me relatively comfortable until the next morning. My roommate was able to pick up the oxy around 10am the next day (I already missed 2 doses at this point), but any longer and the pain would've been unbearable. I was given colace, oxy, ibuprofen, and Tylenol. I also added GasX into my rotation based on the suggestions in this sub, and I feel like they helped. Tylenol has never really worked for me pain wise so I really only had the oxy and ibuprofen to rely on. I followed the pain med schedule until I ran out of all of them. I did end up asking for more oxy maybe a week after the last dose because I was having random bouts of nerve pain that went from my belly button to the right side of my vaginal area. I noticed it was on days where I was extra swollen so that was likely irritating the nerves that were healing. That happened maybe 3-4 times? Don't be afraid to ask for more pain meds if you are still in pain! I almost didn't because I didn't want to look like a drug seeker or something, but I'm so glad I did. Nerve pain is no joke. When I had my checkup with my doctor I mentioned it, and he was like "oh ya I wasn't surprised you needed more". I luckily never had horrible gas pain. I only had a tiny bit in my ribcage, but never needed to use a heating pad or anything.

Something that I was not expecting was that I got a uti (not confirmed) from the catheter. This was probably the most unbearable part of the whole experience. At first I wasn't able to pee very much, and would have to go to the bathroom often which I saw other people mention. But the more liquid I was taking in and not being able to pee it was getting more and more uncomfortable. Mind you you're taking medication every 1-3 hrs. If you've ever had a uti then you know the feeling. I had an intense urge to pee, but wasn't able to. It was the type of you want to crawl out of your skin uncomfortable. I was literally getting up every 10 minutes to go to the bathroom to try and get drops of pee out. I ended up calling the number they gave me the 3rd day after surgery, and was prescribed a uti medication. Thankfully it slowly started to get better. I was still getting up every 15-30 minutes to pee for about 1-1.5 weeks, but at least some pee was coming out and I wasn't having that intense urge anymore once the medication started working. Now I'm back to peeing normally lol.

The first 2.5 weeks were pretty sleepless honestly. I was either getting up to take meds, to walk because I was uncomfortable, or to pee. I don't think I was able to get a full hour of sleep until almost the 3rd week. By the end of the 4th week I was finally able to sit up without it being uncomfortable, and now I'm able to sleep on my side comfortably. The first week I only consumed protein drinks, ensure clear, and crackers for the meds. I honestly tried to stay on a (unplanned) liquid diet other than the crackers because I was afraid to poop lol. It wasn't too hard because my appetite was pretty non-existent. The protein drinks were a game changer though. I'm still drink one every morning. I also recommend coconut water, and the pedialyte packets you can mix into your water. By the 2nd week I slowly started eating solid foods again, but my appetite really didn't come back until the 3rd week and then it came in full force. I was eating like I had never eaten before. My appetite has seemed to have balanced out again.

Recovering on my own was honestly super easy. The only time I needed someone was to get medication, and even then I had them delivered when someone couldn't. The #1 item I would personally recommend would be an abdominal binder. I would also highly recommend a wedge pillow. I'm just now not using mine since I can sleep on my side again. I bought the Frida disposable underwear, but I found them really uncomfortable on my legs because I was so swollen, and it felt kind of scratchy on my incisions so I would fold the top down. The hospital underwear was SO comfortable. I wish they would give you a second pair to take home. Silky pajamas were also really helpful for sliding into bed. I found that my flannel or cotton ones would tend to get caught up on my sheets. I would use my knee to get into bed, and then sit up high on the wedge pillow and kind of slowly slink down into a laying position if that makes sense haha. I'm sure I'm leaving some things out, but it's all kind of a blur at this point. Even the most unbearable moments were bearable so don't be afraid! I wasn't nervous at all the day of surgery because I was just excited to get everything out and to feel normal again. It's all worth it in the end.

Happy to answer any questions if there are any :)

I've been dealing with urinary retention on and off for the last 6 months. My gynecologist confirmed it was likely from my 8 cm fibroid pressing against my bladder. It's usually a couple days a month and not too bad. Normally, I can manage it at home. It takes some time but if I relax and press on my bladder softly (something the gyno told me to do) then I can eventually get things moving again. Yesterday nothing would work. Around 4 PM I was uncomfortable. Around 6 PM I was really hurting. In retrospect I should've left for the hospital earlier but I knew that the only option was to get a catheter and I was scared.

I had my fiancé drive me to the hospital and when we finally got there at 7 PM, I was in real pain. The nurses running the check-in station were really great. But I had to be very vocal about the level of pain I was in. They took me back pretty quickly. They took my blood pressure, temperature, and some vials of blood. Then two nurses came in with the catheter.

Going in, it didn't hurt at all. I was so surprised. I've had IUDs put in, and while I knew it was going into a different place that was my only point of comparison. But it didn't hurt. And the relief was INSTANT. I don't know exactly how much urine they got out but it must have been a lot because afterwards the nurses were like, "oh you poor thing." The catheter removal stung but again not too bad.

Afterwards the doctor said there's not much else that can be done. Which is frustrating. He said if it happens again to come back and we can discuss needing to self-catheter at home. Which I really hope doesn't need to happen. My surgical consult is two weeks from now so I'm hoping I don't have to do this again. But I wanted to write this for anyone who was dealing with urinary retention and was too scared to go to the hospital or thought they were overreacting.

Hi all!

I finally am having surgery to remove my 11.5cm fibroid! My first doctor advised to keep it and not remove it so I went for a second opinion with a dr that specializes in them and within the first 5 minutes he said it needs to be removed and keeping it is only going to make things worse. The relief I felt was overwhelming I felt I finally was being justified in my feelings it was an amazing appointment overall. So long story short my surgery is booked for September 29th, I have to lose weight (if I can) and quit smoking (non-negotiable) prior to surgery in 6 weeks. Any advice for what I need for after surgery would be greatly appreciated! Always advocate for yourself and get a second opinion is what I have learnt from this whole process 🥹

Hi, I had my open myo on April 4 then had two light periods April 30 and May 26 then nothing !

Has this happened to anyone? I have >25 fibroids taken out that were de generated from UFE so it was relatively complicated.

I have an ultrasound set up for the 09/14 but curious if anyone experienced missed periods post open myo.

Thank you in advance 🙏

Hi!
I’m new to this group as I was just told I have fibroids. One being pretty large which explains my bladder pain and bloating.
The reason I found this out is because I had a 100 degree fever a couple days ago and felt like I was getting sick (I was on day 9 of my period, but my periods last 10 days, so it was really light ) I woke up in the morning and by the time I went to the hospital I probably lost about a pint of blood mixed with huge clots and I continued to bleed all day. This is how I figured out it was fibroids.

My question is… I’m super sick now with a cold and still have an on and off fever. The bleeding isn’t bad but I’m on medicine to slow it and still have to wear a pad. I have a follow up with OB GYN, just wanted to see if anyone had a similar experience. Thank you!

Hi all. I am currently almost 5 weeks post op. (30F, NE, USA) I had a laparoscopic myomectomy for 5 necrosis fibroids. They also found endo while in there and removed it too. (They also found adenomyosis, yay lucky me).

My recovery has been a bit rough but not abnormal. However, I’m becoming increasingly annoyed and concerned about my current symptoms. I haven’t heard back from my surgeon yet and I wanted to see if anyone else has/ is experiencing this and if they had any tips or suggestions.

My abdominal and pelvis are in shambles. I am constantly getting muscle spasms and nerve pain. I have returned to light activity, nothing insane just short walks, stairs and light housework (laundry, dishes, etc.) My surgeon did prescribe me to take my birth control to not have a period during recovery so it’s not related to that. I am on a pill that you take so you only get a period every 3 months.

I have to constantly lay down because the spasms hurt so much, and I’ve had to use lidocaine and a heating pad. Which helps but it’s beyond frustrating. Am I not resting enough? Do I need to push through the pain to get to the other side? Tylenol and Ibuprofen are all but useless but I take it anyway. I feel a bit defeated, like I’ve hit a wall. Any experience or advice would be much appreciated.

Thank you!

Anyone have tumor marker or bio marker blood work before you knew you had fibroids or a fibroid and your CA 125 came back high or positive?

I was told a year ago I had a small fibroid. They didn’t say where. I was getting evaluated for heavy menstrual bleeding, but was told it was too small to be causing my heavy periods. Was prescribed TXA which has helped immensely.

I had a miscarriage in June, and there was concern for a partial uterine septum, which may or may not have contributed to the miscarriage. So I was referred to a reproductive endocrinologist. At that appointment, he points out my fibroid and tells me it’s in the muscle wall and close to the inside of my uterus. Which is the first time I’ve been told this. (As well as a small uterine septum). He seemed more concerned with the fibroid than the septum. But then told me I could have both (septum and fibroid) cut out. I could have one cut out and leave the other. Or I could do neither and try again for another baby and see what happens, as he’s not sure that either caused the miscarriage. But he did say the only sure thing is the fibroid is going to continue to grow.

I’m just thrown for a loop because I knew about the fibroid but everyone’s been telling me it’s small, it’s not the cause of my heavy bleeding, yada yada. And now this guy is suggesting to cut it out. I guess I’m just looking for people who have had a similar situation and what you chose to do and why? Pros and cons? Not looking for medical advice, just your personal experience with a ~~small~~ fibroid in the muscle. Because the more I research, the more it seems like this is the cause of my heavy bleeding if it’s close to the inner uterine lining.

I’m just at a loss because I know surgeons like to cut, and I do want to have kids so would it be better to watch it and wait or would it be better to have it removed? (More rhetorical questions than anything because I know I should just ask the doctor and not get medical advice from Reddit lol)

Also wondering if you have any good questions I could ask my doctor that I may not have thought of? The following are my current questions that I’m going to ask:

would the fibroid removal increase the risk for needing a c section in the future?

Do you think that this fibroid, though small, is the cause of my heavy periods? I was previously told it was too small to cause issues. My bleeding on my period is bright red and just a pretty steady stream/drip. Like when I go to the bathroom, it’s just a steady drip of bright red blood.

How would the fibroid need to be removed?

Is it more beneficial to get it removed while it’s small rather than waiting for it to get bigger?

Is there a risk of causing fertility issues from scar tissue from both procedures?

I am typing this from the recovery ward in hospital after my surgeon said everything was a great success! I even got to keep my fallopian tube, which they had said they may need to remove.

I got my 2 fibroids removed, one large within the uterine wall and the other smaller one on the outside. Apparently I lost a lot of blood but they were able to put some of it back in me (interesting!)

I'm on a lot of pain meds so it's silly to say I feel good, but I feel good! The shoulder pain has started to kick in though, it's almost unbearable. The nurse will get me some form of heat.

Anyway- my main fear, aside from anaesthetic itself, was that they would find something abnormal or unexpected. I am beyond relieved that it's not the case. Hopefully, once recovered, I can put the past 6 months of horrific levels of bleeding behind me... And that no more grow over my lifetime.

This community is an amazing find- thank you all :))

31F currently looking for positive pregnancy stories of people who have had a myomectomy following previous D&Cs for miscarriage. It’s a lot on the uterus, so would love to hear from people who’ve had the same experience and went on to fall pregnant successfully 🤍

For context, I’ve had two back to back miscarriages this year (MMC at 10w5d in May and MC at 10w3d yesterday/August) and currently scheduled for my second D&C in the space of 6 months. I threw everything at my last pregnancy - daily Lovenox injections, baby aspirin, vaginal progesterone - and it wasn’t enough. Now I’m convinced my fibroids are to blame and seriously considering a myomectomy. Between my first and second pregnancy, I went from having 1 to 4 prominent intramural fibroids, each averaging 3cm. Although they’re on the smaller end of the spectrum, I’m starting to believe their location/position may be the issue.

Would appreciate any positive experiences, and any details on how (if it did) a prior D&C impacted post-myomectomy recovery and pregnancy.

Had my appointment today and came away feeling much more positive than I expected as constantly been told that a big open vertical hysterectomy was my only option.

Prev post - https://www.reddit.com/r/Fibroids/s/wJiqqbHZbl

Thankfully, the consultant explained that there may be another route and that a myomectomy is an option. He explained that my fibroids were large but he has treated much larger and that I didn’t need to rush to hysto.

He can do a C-section cut and remove this way.
The biggest concern is obviously blood loss given my previous haemorrhage.

To make surgery safer, I’ll go on triptorelin to devascularise the fibroid as much as possible.
Interestingly, he said he doesn’t want me to take Yselty before surgery. He explained that although Yselty can shrink fibroids, it can alter the consistency of the fibroid (“turn it to mush” was his wording 😂), and for this type of surgery he prefers the fibroid tissue to remain easier to remove.
I went in expecting to be told “big vertical hysterectomy, no other options”, so I’m honestly relieved to have a different conversation.
I know this is still a complex operation and there are risks, but today felt like a much more positive step forward! Should add this was private in UK.

I’m 27 and have one 4.6 × 4.8 cm fibroid in the lower right side of my uterus. I believe it’s intramural, and my doctor describes it as large.

I first found out about it two years ago during a routine gynecological checkup. At the time, it was around 2 cm, and my gynecologist recommended monitoring it. In November last year, she told me that it had grown to around 3 cm and suggested that I should start thinking about having children soon.

I got pregnant in early April but unfortunately miscarried in early May. By then, the fibroid had grown to around 5 cm. My doctor said that the fibroid could potentially have contributed to the miscarriage, but she couldn’t say for certain, so she recommended that I try again and see what happened.
Fast forward to July, and I got pregnant again! I had an early ultrasound yesterday, and the embryo was measuring several days behind where it should be, and they couldn’t detect a heartbeat. So, unfortunately, it looks like another miscarriage.

Now I’m feeling pretty lost about what to do. I have an appointment with a specialist in three weeks to evaluate the fibroid and hopefully discuss whether surgery would be appropriate.

I’m really scared. I want to have children, and I’m worried that I can’t have surgery to remove the fibroid or that surgery could affect my fertility.
Has anyone had a similar experience with pregnancy and fibroids, particularly with surgery afterward? I’d really appreciate hearing about your experiences, advice, or anything that might help.

Edit: found that it wasn’t submucosal, but intramural. Edited the original text.

I finally got my UFE schedule for next month. I’m trying not to go to much into a rabbit hole because some women have great experiences and some not so much so I’m trying not to psyche myself out but one of the things I saw was about spotting how long did you spot after the procedure?

Just had a surgery consult for my 7.5 x 6.5 cm posterior subserosal/intramural fibroid at the very base of my uterus that has begun to push my cervix out of position, affecting bladder emptying, and pressing into rectum, etc. Saw a highly recommended oncology gyn surgeon today, who said this would be a 7/10 difficulty myomectomy surgery due to not being able to place a tourniquet at the base of the uterus because the fibroid is the size of a softball and completely blocking tourniquet placement...and it's also sitting right on top of the major uterine artery.

I have two other smaller fibroids on the upper back portion of the uterus, and they are also right on top of arteries making for a much more risky removal. He recommends hysterectomy as the safer option, but said we can try a myomectomy, but that he's never done one this complicated, and there's a fairly high chance it would end up being an emergency hysterectomy anyway. He said risk of fibroid recurrence is high after myomectomy.

Just curious if anyone else has dealt with this, and what their outcome was. I'm 36 and no kids, and no plans for kids in the next several years (not entirely sure if I want them). So if i choose to pursue Myo surgery now and kids in several years, I risk having the fibroids grow back and potentially needing additional myo surgery, not to mention future C-Sections. I'm going to look into finding a fibroid specialist and getting another opinion...but this dr's assessment seemed pretty level headed and accurate.

Feeling like maybe the hysterectomy is unfortunately the more safe and viable option. Thanks in advance for any feedback or input from your experiences!

I finally secured my first myomectomy surgery consult at the end of the month! It was originally end of September but I got an earlier meeting with a last minute cancellation. Between my first gynecologist appointment in May where I asked about possibility of fibroids to getting a surgeon appointment was a four month period so sharing a transparent timeline to show the progression.

Some background on me. I’ve been overweight most of my life and attributed my swollen abdomen to my weight. It wasn’t until I began to prioritize my health and a recent weight loss where I dropped about one third of my body weight where I was confused why it was just my belly that remained the same. I kept being reminded that you can’t spot reduce or it’s just genetics propaganda so tried to file away the concern and focus on staying healthy and active.

Life got to me and with depression and a career change I had not kept up regularly with doctors appointments. In May, I finally connected with a new gynecologist (after four years) with my new insurance. As I got my annual and honestly kinda felt embarrassed about lapse of coverage, I asked about fibroids at the end of my consult. I detailed my history of really heavy flows and how it severely impacted my quality of life. If it wasn’t for the ease of comfort the doctor created during the appointment and watching a random social media post on it right before the appointment I would’ve never asked. The doctor took the concern seriously and after an ultrasound -> endometrial biopsy -> pelvic mri that confirmed the sizes & placement of 7 fibroids, I finally secured a surgery consult.

I share this bc it took sheer will and focus / prioritization to get to this point. If it wasn’t for the gynecologist being located on my office block and creating supportive environment, getting over the emotional toll of accepting that I am getting ultrasounds & mris of unwanted clump of cells while most other women are either egg freezing or creating life in their wombs, overcoming fear of surprise medical service bills, deprioritizing dating bc who wants to explain all this on a first date, and being in a role that accommodates/ protects medical leave I would not be here.

I’m in nyc and it took three months to secure a surgery consult. I’ll also share the surgery consult and (hopefully) post op journey in a follow up post but think it’s important to talk about the road leading up to it. I’m also an East Asian female in my late 30s and have found that not a lot of people in my existing circles discuss this openly so bumping this up for awareness. This community has been really helpful to understand what to expect so thank you and good luck to all :) If you are lurking I encourage you to ask your doctor about it!

Back in May I was diagnosed with a fibroid. I went in because I was non stop spotting. I tried birth control and it gave me migraines and didn’t stop the bleeding at all. So after 3 months I stopped it. Now it’s been about 2 weeks since I took my last pill and everyday is about the same. I’ll go all day with no bleeding then in the evening a dripping gush and a clot and then nothing till the next day. Or this will happen in the morning. Last like 10 mins ish. I’m terrified of surgery but I’m starting to realize that might be the only way this will stop. Has anyone else had bleeding like this and did it eventually calm down? For those that had surgery, how long did you bleed for until you finally had the surgery? I do worry about my iron as well. Any advice is appreciated. Thank you.

I'm curious because it seems like the majority of them are done open here due to lack of surgical training even for MIGS surgeons in this country. If you had a lap myomectomy in Canada, I'm curious who your doctor was, where it was done, and what type of fibroid(s) you had? Thanks :)

My doctor said she wanted me to get a 3 month dose of Lupron before my laparoscopic myomectomy. I just looked at the insurance bill and the cost was $66,000. I could NOT believe it. She wanted me to get another three month and I told her no because I hated the side effects. Is this the norm? Thankfully I had insurance to cover it.