Calling JPie and Redwood66

[Gabbycat]

@JPie and @redwood66, I just noticed in one of the other threads that you both dealt with fibroids. I was diagnosed with these a few months ago when they did an MRI on my back and found the mass that represented the largest one, which was 9 cm at the time. They were not giving me problems then, so we took a wait and see approach.

It is clear that at this point I need to do something about them (the large one is now 11 cm, and I also have 3 smaller 1.5 cm ones that are clumped together so that they initially looked like a single 4-5 cm one). Besides cramping (that sent me to the ER when it first began because it was the worst abdominal pain I have ever felt in my life), I have incessant bloating, frequent and urgent urination and nocturia, and my back feels tight all. the. time. In fact, I'm feeling more sure each day that they are responsible for my initial back problem that lead me to having the MRI. Fortunately I have no major bleeding issues now, but I also don't want to wait until this becomes an issue.

I am feeling paralyzed by the options out there to deal with this, namely: UFE, myomectomy, or hysterectomy. My questions are: What did your pain/issues feel like? Was the cramping like regular period pain or more like super deep cramping and stabbing pain like I've had? And Bonfire, you mentioned not regretting losing your uterus. Have you had any complications at all? I understand that many women have back pain due to organs prolapsing from the structural changes following hysterectomy. Has that been your experience? How did you decide how you would move forward?

I know these are personal questions, so if you don't wish to answer feel free to ignore. I'm just feeling really confused, scared, and lonely as I don't have any other friends that have dealt with this who can relate and discuss, and I seriously cannot decide what to to about them. I've done tons of research, but I feel like the more personal experiences I hear the more it helps me deal with mine.

And if anyone else has read through this thread that also had this problem and wishes to share their thoughts or experience please feel free to contribute.

 

[JPie]

I’m sorry you’re going through this. It does seem like a little-understood issue and it’s disruptive and draining. You are definitely not alone.

I was diagnosed over a year ago when I woke up with pain so bad that I doubled over in the fetal position and cried out every time a new wave of pain hit. That’s the first time I had pain intense enough to make me dry heave. The ER staff diagnosed me and had me follow up with my OBGYN.

Overall, I’ve had more cramping during my periods as well as slight bloating. For the period pain, I use a hot compress first and move on to ibuprofen if it doesn’t work. The really intense pain seems to be triggered by stress and it feels like a sharp, stabbing sensation. Sometimes I mistake it for abdominal pain because my fibroid is on top of my uterus. That’s when I take about 1,000 mg of acetaminophen and sleep.

My fibroid is relatively small (I can’t recall the exact size), and I feel like I’ve got enough of a handle on dealing with it that I haven’t had to consider surgery. I see an acupuncturist monthly; I was already going to her for general health and I read somewhere that it has been shown to shrink fibroids sometimes. I wonder if that’s the reason mine hasn’t grown.

I know a lady who has a large one towards her back, and her symptoms sound similar to yours. She also gets bad back pain and she mentioned having unusually heavy periods, cramping, bloating - the works. The last time we spoke, she was looking into Ayurvedic treatment but I don’t know whether she ended up doing it or what it entails.

Have you looked into acupuncture? I like it because worst case scenario, it doesn’t work, but it would be far less invasive than surgery. Whatever you end up doing, I hope you find relief soon! I’m always happy to listen if you need to talk about it.

 

[Bonfire]

Hi Gabbycat. I’m so sorry you are dealing with this I don’t know how old you are, but my situation was exacerbated by hormone treatment for (DCIS) I was on a 5 year Tamoxifen protocol starting in my late forties through early fifties during which time I went through menopause. The Tamoxifen caused my otherwise small fibroids to quickly grow very large (large orange to small grapefruit in size) My only symptoms were spotting after menopause and some aching, no severe pain luckily. My OBGYN was very concerned about the size and quick growth and as I was in my early fifties and already in menopause, out it all comes!

That was 10 years ago and I’ve not experienced any “structural prolapse” or other issues (that I’m aware of!) There are other treatments for fibroids. Hysterectomy for a younger women should not be the first line of defense, unless truely necessary. Clinically fibroids are supposed to shrink with menopause, however, there is no reason to suffer as you are until then. Do you have a good OBGYN that you trust? Get different opinions if you aren’t getting good answers or treatment options from your doctor. Fibroids (of varying degrees) are a very common gynecological issue and treatments are available to stop your suffering. Good luck and please let me know if I can help in any other way.

 

[Gabbycat]

Thank you, @JPie. I appreciate you sharing your experience. I have not looked into acupuncture, but I suppose it would be worth a shot. Not sure about insurance coverage, but I'll investigate. Your pain description helps the most as the doctors didn't seem to think it was fibroid pain and had me convinced it was something more serious. I'm amazed that you can deal with this so well. I'm such a sissy when it comes to pain! I hate taking pain meds, and especially ibuprofen since I already have other gut issues and worry about the damage they can do. I haven't tried Tylenol in high doses, though. Maybe that would be the way to go.

@Bonfire, I'll be 42 at the end of the month. And I don't trust my GYN for the reason I told JPie above. The GYN told me they didn't think it was fibroid pain and sent me to a GI. I got a colonoscopy that came up completely clean, and I'm very angry that I had such an invasive test for no good reason. But thank you for sharing your personal story and explaining how you came to the hysterectomy option. I don't want to get it taken out if at all possible. I don't have kids, and have never wanted any, but my understanding is that not only is it good to keep it in for structural purposes but also the ovaries and uterus communicate with each other which would help with hormone issues since I haven't gone through menopause. I'm glad that you haven't dealt with prolapse. My GYN did say that they method of removal can influence if that becomes a problem or not.

Thanks to both of you for sharing and for the suggestions. It's encouraging to hear from such strong women. If you can survive this then I can, too!

 

[Calliecake]

Gabbycat, I have not had fibroid but have had uterine and ovary problems for 40 years. If you live near a large city please try to find a great doctor at one of better hospitals. I’ve had 2 major surgeries and at least 10 laparoscopic surgeries over the years, many of which should not have been done and have caused problems going forward. Please ask your doctor how whatever you decide to do, will impact your health as you get older.

 

[JPie]

@Gabbycat The ER doctor also told me that fibroids don’t cause this kind of pain. If they didn’t then why was I dry heaving from it?! Luckily my OBGYN was better.

Another friend had a fibroid in or near her breast, and that caused her immense pain too. I’ve heard other stories through my acupuncturist and the symptoms are real.

I don’t think you’re being a sissy about the pain. It f-in HURTS! Like, can barely move, can’t think to do anything but cry in pain hurt. I think it might take some time to figure out how best to manage the pain and personally I see surgery as a last-ditch effort. Regardless, I hope you find a good doctor who can help you with this.

 

[redwood66]

@Gabbycat I am so sorry you are going through this and I know how awful the pain is that you are having. My pain started at about 45 or 46 and I was lax at going to the OBGyn at that time. I finally decided I had to do something about it. I would be doubled over and sitting on the toilet with diarrhea because it was so bad. That would last about 20mins and then be gone. I was pre-menopausal most likely. The hysterectomy was the best choice for me and I have had no prolapse issues, keeping up annually with my doc now and he says I have plenty of "strength" to keep it from happening. Kegels help. My doc did do a robotic hysterectomy which makes recovery much easier and was so worth it to have only 3 small incisions. It is important to have a doc you can trust. The large fibroid I had was 12-13 cms and on the back of the uterus so it did not show up well with the wand scope. I wish I had done it earlier and not lived so many years with the pain. He did not take my ovaries because he said they looked fine and did not want to throw me into full blown menopause. I think I have gone through it now that I am almost 53 but I never really had bad symptoms other than occasional night sweats. DH says I "might" have been irritable once in awhile.

Had to edit the size cuz DH was the one who listened after surgery. I was out of it. LOL.

 

[Gabbycat]

@ Calliecake, I hope I'm not being too instrusive, but would you mind elaborating about unnecessary surgeries? Are you saying you don't think a laparoscopic surgery would be a good idea? I'm genuinely interested as the only other surgery I had abdominally was when I was 17 for an ovarian torsion, and I was cut completely open for that one.

@redwood66, thank you for mentioning the diarrhea. That was also a symptom of mine. I have IBS-d, and it's always worse the first day of my period so I didn't think too much about it, but I noticed it was more than usual. I am in a larger city, and I have found a minimally invasive specialist here. The problem is that he has a 12 week wait list for any procedure, and appointments just to talk are about 6 weeks out. I'm inclined to pursue him because it's all he does, so I'm sure he'd be good at either surgery depending on myomectomy or hysterectomy. I understand that going into menopause helps, but if I follow the same pattern as my mother that wouldn't be for another 6 years, and I'm pretty sure I won't be able to hold out that long. I'm pretty sure I'm pre-menopausal as well as I already get night sweats right before my period starts. And your hubby is sweet to downplay any menopause symptoms.

I also have hair fall, but my thyroid has been checked a million times. My testosterone is up slightly, but apparently not enough to be a big concern. Anyone else have this symptom, too? And not sciatica but numbness in my left leg and foot in certain positions which I think is from the pressing on the back. I know I sound like a complete mess, and many days I feel that way.

 

[redwood66]

@Gabbycat I would wait for that doc if he is highly recommended. And I definitely would not let this go 6 years if the pain is that bad. I do not have IBS or any other bowel problems so the diarrhea was directly related to the pain as it was only at that time. I didn't have any hair falling out other than the normal loss that people with curly hair have. My back problems are from herniated discs and not from the fibroids. Good luck getting in soon! Maybe they can put you in line for a cancellation. You don't sound like a mess but I know you feel like one and it is no fun. Hugs to you.

 

[missy]

@Gabbycat I’m so sorry you’re going through this. Serious health concerns are scary. We are not in complete control and the unknown is scary. I agree with @redwood66 that waiting for the best specialist in the field is probably worth it. And in the meantime call daily or two times daily for a cancellation. There’s always a cancellation and if you’re flexible you might be able to get in sooner. Sending you warm wishes and healing vibes and gentle hugs.

 

[JPie]

Mine is acting up today. Spent about an hour in bed with hot compresses and drank some hot water with dark brown sugar and slices of ginger at my acupuncturist’s recommendation. It seemed to work for about two hours, but the pain came back worse after dinner. Said f it, popped 600 mg of ibuprofen, and waiting for it to kick in.

Luckily I was working from home today and it started after I wrapped up already.

 

[JPie]

@Gabbycat How have you been doing? It's been a while since this thread has been active and I hope you're feeling better today than you did this time last year.

I wanted to add my update in case it helps anyone else in the same boat. My fibroid has since grown to 9cm, and I have a smaller one about 1-2 cm near my bladder. I've been cramping more with an increased urge to pee, especially if I'm lying on my left side in bed. The cramping is uncomfortable at best, and debilitating at worst. Ibuprofen is still effective, thankfully. Some days the bloating is enough to send me up a dress size.

After consulting with a surgeon, I scheduled a laparoscopic myomectomy for December. What convinced me was that she said the fibroids will only keep growing until menopause, and I'm likely over a decade away from that. As the fibroids grow, symptoms will only get worse, and I'm annoyed enough with them as it is! Chances of post-surgery recurrence of fibroids for a situation like mine are around 3%, and the main risk is infection of the incisions, also around 3% (I don't remember for certain). Recovery time is 2-4 weeks.

Anyway, I'm counting down the days until I can have the surgery and finally be rid of these damn fibroids!

 

[Gabbycat]

@JPie Thank you for thinking of me, and I completely forgot that I had opened this thread. I did end up going with the minimally invasive specialist, and a cancellation happened in the middle of December last year that helped me get the surgery sooner. It turns out that I did not have a fibroid, but it was actually a fibroma. It was the size of a baby's head, and it was attached to my fallopian tube and ovary and was strangling them both by cutting off the blood supply. Turns out the pain I was feeling was because it had actually started necrosing.

The doctor attempted to keep things minimal with just laparoscopy, but because of the size of the fibroma the morcellation didn't work entirely, so he did end up having to make a small, approximately 3 inch incision to remove the fibroid as well as the tube and ovary.

Besides a really bad night right after the surgery, with the exception of some initial soreness and having my first ever actual gallbladder attack two weeks later, the recovery was actually fairly easy. I took four weeks off but probably could have gotten by with less for my desk job.

The good news is that I am past the sharp pains, and I don't completely feel like I'm dying around the time of my period. In fact, I actually had less cramping the first day of my period and easier periods overall for the first months after surgery, almost like when I had been on oral birth control, though that has seemed to even back out a bit. The bad news is that it did not resolve the back pain, and he saw the beginnings of what looked to be the same thing on the other side. I now have to follow up with the ObGyn every six months and get ultrasounds to make sure it isn't growing. If it becomes clear that it is, I will go back to surgery immediately to remove the other side (well, what would end up a hysterectomy at that point) to make sure it doesn't reach the proportions it did on the other side.

I am so glad that I decided to go with the surgery and skip the UFE since it would not have helped and actually probably caused more harm in my instance. I am even currently happy that I decided against the hysterectomy, even if it means the frequent check-ins because my hope is, like for many of us, that menopause will beat out the growth. I am going to be 43 this month, and I definitely am in perimenopause. I am hopeful that I will be able to finish out this stage naturally. My mother was completely finished with menopause by 48, and in some ways I think the fact that I am down to one ovary may mean mine will come even sooner. But even if I have to do this all over again I have a fair idea now of what to expect.

I am so happy that you have decided to take care of yours, and I definitely wish you well with your procedure. You will feel so much better having that thing out! Please keep us posted on how you are doing. In the meantime, hang in there! There's light at the end of the tunnel.

 

[JPie]

Holy crap @Gabbycat , you’ve had quite the ride! I’m glad you’re doing better and I hope you don’t need another surgery.