Large Fibroid + Esmya + Exercise

Women's health
1

Hi ladies,

I've posted here a few times now and you've all been great so was looking to hear some experiences with large fibroids + esmya + gym exercise. I have one large one that's probably between 12-13cm now. I'm sure there's smaller ones that we just can't see too.

My lower back has been hurting for about 6 months now, especially when I bend, and has been getting progressively worse. I also can't really bend sideways to the left because that causes an intense pain on the right side. There are certain exercises that are just getting really painful. E.g.

-planking/mountain climbers: the lower back hurts and i feel like the weight makes me sink

-floor exercises on my back: eg leg raises, scissor legs etc anything that involves bending the abdomen

I'm also finding that I'm much weaker than i used to be. It's really a confronting experience to just consistently get weaker. It's not really cardio, but more strength that's suffering.

I did have a couple weeks off exercise over Christmas break so i know there's a transition period but the pain has just increased dramatically the last 2 weeks.i almost cried in class this week lol Admittedly I did have my period this week and since I started Esmya, wasn't using Tranexamic Acid to save me. (Omg I forgot how horrible life was before that magic pill)

So what have your experiences been with exercise? Do you find pushing through the pain made things worse in general, did it cause any other issues? Did you get weaker/stronger with Esmya? Did you discover ways to reduce the pain? Did you give up on exercise? Is there anything you want to get off your chest and share?!

Thanks ladies x

2

Hi Jess, Mine is 13cm too, Ive had Esmya & Zoladexs but neither shrunk it. Where is yours & how old are you? Ive know about mine since before I was pregnant but decided to try for a baby anyway, my son is 9 years old now. They said they couldn't see the fibroid when I had a C Section. Maybe stretched at that point in the uterine wall. But its bigger than ever now & has been attributing to lower back pain for years. I've just had an MRI (a couple of weeks ago) but not had the results yet) as one consultant thought it may be exhausting its blood supply, I however doubt that. It would seem decision time for me is getting nearer. I have "put a procedure off" because I'm overweight & unfit. Something I blame on debilitating lower back pain, but I'll have to do something sooner or later, but it's knowing what though. As a MRGFUS dont do fibroids the size of ours & UFE may not reduce it much with it being so big & already having a reduced blood supply. Scared of surgery & the side effects but will be cross with myself for not having it removed if I get a quality of life back after surgery.

3

Hi Jess,

I'm on my third month of Esmya and I'm not sure if my 10cm fibroid has shrunk yet but it has help with the cramps and the heavy periods, and I'm back at the gym with no problems. The only exercise that really hurts is hip thrusts, understandingly, but otherwise I'm very happy with it. I'm actually dreading the break from Esmya. Good luck!

Maria

4

Hi Jess, the main exercises I do are tennis, Pilates and dog walking (hilly terrain). I found when my fibroids were at their largest, that I had almost constant back pain and bending was compromised. Tennis and walking were OK, other than bleeding and incontinence problems when I exerted myself, so I always wore a large pad. With Pilates I had to stop doing the stretches lying on my stomach, it was just too painful, and some abdominal work was tough too. 

Esmya softened up the fibroids as well as shrinking them, and the problems went away. I have one central fibroid grown back now, but much smaller than before, and the only problem has been bleeding, even that has not been excessive. 

5

hi Heather,

Im 30yo and it's a subserosal fibroid on the left side. I'm sorry to hear the meds didn't work. Surgery is scary, especially if it's an open myomectomy, but it's definitely a balancing act, weighing the temporary pain for life long relief!  The back pain definitely makes it difficult to exercise so don'tb e too hard on yourself! But definitely look to try to look after yourself and prep your body especially if you do have surgery!

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thanks for your reply Maria. Yes, the hip thrusts hurt. Glad the Esmya has been helping and hope it's shrunk!

7

Thanks for your response. Yes, bending is very difficult. I'm finding especially in the mornings when I bend i can a painful reminder and wake up call! Yes, i can't lay on my stomach too long these days. Good to know that they soften up as well. I do find I pee myself a teeny tiny bit during exercise occassionally. Just a ltitle bit. It's always a shock since i'm only 30! lol

I think i'm just in shock over how significantly my pain has increased and I'm also wondering how much of that has to do with starting the Esmya.

8

I think you just have to be a bit more mindful of the weight, but otherwise it's fine smile

9

Also I find that bridges and hip thrust help with my back and hip pain. Good luck Jess!

10

Hi Jess (from one Jess to another!)

Well I've been experiencing frequent urination for the last two years but particularly worse the last 4-5mths hence a trip to the GP to discuss this plus a lump i could feel above my pubic bone. Long story short I've got an 8x8cm fibroid posterior position which is basically pushing my uterus into my bladder cavity hence the bladder pressure!

The NHS doc wanted to put me on Esmya prior to Xmas with a review in 4mths to discuss treatment options but I didn't feel comfortable going on the tablets after reading up online. I can suffer with bad headaches anyway and am shattered so the thought of those side effects weren't appealing, plus I'd read that Esmya doesn't always work and it's only a temp fix as once the drugs stop, the fibroid continues to grow.

I paid to see a private consultant 2wks ago and after discussing treatment options, I've opted for a hysterectomy keeping my ovaries and cervix. Not a decision I've taken lightly but due to the size of it, most other treatments aren't that great options and I'm concerned if I opt for a myomectomy to remove it, I could just end up in the same position again down the line.... I've had my lovely son so I'm fortunate that future fertility isn't a concern.

I used to go to the gym 3-4 times a week and do 5 classes, aerobics, core, Pilates, Zumba etc but the last month I've had to stop everything as it's just got too painful. First of all I stopped core and Pilates as anything ab related really hurt so I then wet for Zumba but the last time I did it, my tummy started hurting during the class and I really paid for it later that day. Really gutted that it's having this much impact on my life now. I can't even seem to sweep the floors and dust at home without it hurting....

I would say just listen to your body and do what you feel comfortable with. I would also recommend getting a second opinion on treatment options.

I'm having to go private as the NHS waiting times are in excess of 5-6mths so I'm scheduled for my op in a few weeks...eek!! Scared of what's in store but hoping to recover well and get back exercising. Looking forward to not looking 5months pregnant too! I'm a petite 6-8 so it's been horrid lately.

Good luck

11

Hi Jess,

Your post is a very positive one, would you mind answering me a few questions by PM please, as I appreciate you may not want to write certain things on a public wall. Are you having a laproscopic hysterectomy or are you having open? How old are you? Did you consider UFE? What made you go for a private consultation, did they differ to an NHS opinion? How old are you? Is your fibroid in the lower posterior wall (I think its intramural) mine is, I believe they are more difficult ones to get out & thats why hysterectomy is preferred. I too have a big decision to make but find it very informative & comforting to speak to others.

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Hi Heather,

I don't mind replying on here so others can see but feel free to PM me if you wish to chat privately😉

I am 41yrs old. I had my son via IVF/ICSI as I have polycystic ovaries so my periods have always been all over the place. A few years back I had a burst ovarian cyst which wasn't a pleasant experience and now this fibroid....

I started having frequent urination and bladder pressure about two years ago and blood in my urine although not visible so I was sent to urology for a cystoscopy but it was all clear. The bladder pressure has worsened over the last 5 months and then I found the lump hence going back to the doc again. Once again they referred me to urology for a cancer referral plus scans. I had my ab and pelvis and intravaginal scan and that's when they found the fibroid. I saw the urologist the next day and he wasn't concerned from his point of view due to the fibroid but agreed to still do another cystoscopy. Meanwhile I saw the gynae cons who was very dismissive of my symptoms! He said due to the location of it, intramural posterior, its unlikely to be causing bladder issues so I should complete the cystoscopy and then deal with the fibroid but meanwhile I could take Esmya and go back in 4mths. When asked about the side effects, he said they're very good tablets and lots of people have had success with them. He didn't even examine my ab where the lump is as he can get all the info he needs from the scan!!

I then had my cystoscopy a few wks later and basically my uterus is taking up 50% of my bladder where the fibroid is pushing it. They were quite surprised as normally they see a swelling the size of an egg but not as much as this. My bladder is not able to drain properly hence the need to urinate often and the feeling of not being completely empty. They said the non visible blood in my urine is probably from small uti's where it's not emptying fully.

I decided to see a private gynae cons who has experience with fibroids to discuss everything, be examined properly and seek advice on treatment options. I did lots of research online first.

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Sorry had to post that first bit as I had to go and get breakfast ready for my son before footie!

The things I read online about the various treatment options were as follows:-

Esmya - A lot of people experienced awful side effects of migraines, extreme fatigue and tummy cramps. Seeing as I'm prone to migraine and even more so around ovulation lately and feeling tired and having daily ab cramps now, I didn't want to take my chances with it. Plus it's only a temp fix as you can only take this med for a short period. It's not guaranteed to shrink fibroids and mainly helps ease heavy bleeding, not something I've been experiencing thankfully which is probably due to my PCOS counteracting it. I think it may be an option to tie you over until menopause if you're not wanting surgery, or an option to try prior to surgery. My main thoughts are that the NHS are recommending this to buy time due to the very long waiting lists for surgery!! They can prescribe this twice. The main thing I dislike is that once you stop taking the meds the fibroid simply grows back once your normal hormones kick in.

UAE - initially I thought this sounded good but after reading some of the forums, a lot of people have experienced extreme pain after and for a while. It is a slow process of shrinkage from what I've read and not guaranteed. Plus I don't like the idea of a dead fibroid staying inside me (my personal opinion). Again I think maybe it's a better option for smaller fibroids?

Myomectomy - This is a viable option for me however, again from what I've read and people I know personally, they've had this done but then found themselves in the same position later on where further fibroids have grown. If you wish to have a family then maybe this is an option?

Hysterectomy - I have decided on this option to remove the fibroid but keep my ovaries and cervix. The gynae cons said to keep my ovaries due to my age and to avoid instant menopause. I hope my ovaries are ok at the time of the op as I have polycystic ovaries! I then needed to decide whether to keep my cervix?! A lot of mixed opinions on this but i think I'm going to keep it as I kind of think if it's not an issue why remove it? Any thoughts from anyone on this is welcomed.... I know a lot of people seem to be against hysterectomies for fibroids but to me it seems my only long term solution as I don't want to find myself in this position again.

Due to the size of my fibroid, I am having open abdominal surgery. Whilst my surgeon is a leading keyhole surgeon, she did explain that due to the size of it, it would need to be cut up into small pieces to get it out via keyhole and this poses additional risks plus a fibroid of this size could have large blood supply which will need to be located. I'd rather have open surgery so it's easier to remove and all can be seen more clearly (I hope!). She intends on doing a bikini incision.

It's all been a lot to take in as I only had my scan on Nov and found the fibroid and now I'm scheduled to have my hysterectomy in 3wks!! Thankfully two ladies at my work have had fibroids and hysterectomies so I've had a chance to pick their brains. Both have tried different treatment paths, drugs for 18months, several myomectomies and ultimately ended up with hysterectomies! Having read several forums I have seen similar paths. I'm sure there are others who have had succes with other treatments however, but I don't really want to take my chances....

I just pray my op goes ok and I get back to living again and exercising etc.

Hope this helps! Sorry it's an essay!!!!

14

Also the private gynae had more time to discuss each option and my personal symptoms and concerns! She actually examined my abdomen unlike the NHS cons.

She also explained that the fibroid feeds off the hormones which is why some times during my cycle it feels bigger as it is gorging on the hormones! Yum isn't it! That explains why the pressure on my bladder is worse at certain times and I look pregnant.

Due to my age and hormone levels, it is only going to keep growing....

15

Hi Jess, Thanks for your detailed response it is very much appreciated. I can totally appreciate why you are saying what you are saying as what you say makes a lot of sense & had indeed been a thought process of mine. I have a 9 year old son, I was told before I got pregnant that I had a fibroid & it would be unlikely I'd conceive but that was incorrect. After I had him by emergency C Section, they couldn't see fibroid on operation or during pregnancy. It's in the lower posterior wall. Intramural. Its 12/13cm at last count - this time last year. I've just had it MRI'd again as I was going to have UFE (though I was really concerned about have 12x13cm of necrotic tissue degrading & possibly ionfecting inside me!) however my local NHS interventional radiologist changed so things were delayed, during that time I tried Esmya for 3 months, then a further 3 for no reduction, then Zoladex implants for 6 months, no reduction! Esmya side effects weren't too bad, I'm over weight though as I've had back pain carrying this monster for far too many years, so have become a lot less active. The main side effect for me with Esmya was fluid retention & muscle pain (especially bad in the legs like you are having a dvt!) Zoladex side effects were much worse but I endured them without any tibilone as I was told cold turkey on hormones produces best results, it didn't infact it increased by 1/2cm! I was dissapointed as things got so nbad on the drug I couldn't feel my left arm on it & ended up in A & E New Years Day 2016! However I finished the course in Spring 2016 though one of the 6 implants did infect which was a small set back! By the time I waited for the MRI results (to see what impact it had had) I met with the IR who said he'd do UFE but that the arteries feeding such a large fibroid weren't as fat & juicy as he would have expected. I just thought well I've had it for 9/10 years that I have known so its had a long time to grow, so perhaps a shrinkage if I went for this route shouldn't be expected instantainiously. Though fear of the other oiptions I really gave serious consideration to UFE, however as you say knew the increased risks that especially with larger fibroids that there is more to degenerate, that its all done inside you, that the necrotic tissue thats left can be the cause of infection. A significant worry. However my husban's work changed & I sought a second opinion from seemingly "Mr Fibroid" a IR who works in London & surrounding area. I travelled a long way to see him in August, had an internal & asked him regarding his thoughts on the MRI. To be told he hadn't looked at the MRI but that very few people were unsuitable fro UFE & he arranged for it ti be done on the 21st November 2016. (He works privately & on NHS) I had my pre op assessment in August whilst down there & went back home, with the clarity that a decision had now been made. Only to have a few weeks later a letter arrive saying that he had "now looked at the MRI" & needed to confirm somethings with my local radiologist. After a few weeks wait I then got a letter back saying he didn't think UFE was for me & that he thought from the MRI images taken (dye contrast used which was done differently than at his hospital) that my fibroid could have recently died due to drug treatment of be dying due to size & limited blood supply. He recommended the mirena coil! (Which I'd been told by my gynie years before is not possible in ladies with big fibroids & bulky uterous). i have to say I was a bit cross at the unprofessionalism that I had travelled all the way down there to see someone, a so called expert & they hadn't even been bothered to look at the MRI! So after that I lost faith in him & after consultation with a personal gynie friend of mine, I was made aware that those who privately practise stats can be of significance. So for example if my aging fibroid has a limited blood supply then if UFE had been done maybe whatever shrinkage I would have got wouldn't have been considered successful enough for his stats. My local team say that UFE could still reduce the size but maybe not a lot, difficult to tell, bu that periods would become better after a few months & of course that it wouldn't grow any bigger. (I'll continue this in a mo)

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So next step after receiving the letter was to see my gynie who I'd just seen the week before to tell him I had decided & was doing the UFE! So I had to wait a couple of months for him to contact & arrange an MRI which I had a couple of weeks ago. The purpose being to see if the fibroid had died, is dying, or what. I doubt it & think I have been fobbed off by someone who doesn't want me affecting their stats! I maybe wrong the MRI should tell me this. In the meantime I have horrendous monthlys since finishing another 3 months of Esmya last August so Oct/Nov/Dec have been like crime scenes. Then before Decembers I think I noticed actual clots in my urine, but as they were just before a period so I was unsure. After it stopped though a few days had gone by just before MRI I noticed blood again & I had a big clot in my urine just after the MRI. I went to the dr & he said that it could be a uterine clot stuck, but sent me for a cystoscopy anyway. Had one bladder seemed ok but they referred me for CT scan to double check kidneys. I know some ladies with fast growing fibroids have to make a decision quickly or they'll loose a kidney but up to now I've always been told that mine is not pressing on the tubes to the kidney. After yesterdays CT scan I have horrible lower back & kidney pain & slept all day, though having a cold & lowish temperature isnt helping either, so I've rested today (which I rarely do through the day) but they said keep drinking loads to flush the contrast through the kidneys they used. I read before contrast can damage kidneys but they said the blood check they did before the procedure said the function of my kidneys was fine. It doesn't feel fine today! Maybe another fibroid complication. I don't know. Though I do know they are the cause of a lot as I now could have had to go through an unecessary CT because of a fibroid! (suppose i'm hoping that as I don't want a kidney issue causing blood clots) though I've had not blood clots since. I am fed up & admire youre quickness of action with only finding out in November. I've endured this anxious of surgery, getting fatter & less active with lower back pain, in & out of physio, because I felt my son was too young for Mum to be out of the loop for 6/8/10 weeks & Dad worked away alot. So now I'm on weight loss course, started early December, lost a stone want a few more off at least before procedure. Have Esmya for 3 months, then it is looking like a myomectomy or hysterectomy. My consultant friend said in his opinion hysterectomy is better, as lower posterior wall fibroids have big scaring &bowel adhesion can result. (but there is a membrane that can be used) Also that only a skilled surgeon takes the cervix, he asked me why for what reason I'd like to keep it, I couldn't answer him. He said with it gone then there is no future risk of cervical cancer. I too thought about myomectomy, but had a telephoone conversation with an excellent surgeon who said he see's many ladies on repeat after myomectomy, that morcellation can cause spread if not done perfectly. So I totally hear where you are coming from. x

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Gosh Heather, you've certainly been through it all, what a journey so far! You've been so brave trying all the drugs and coping with the side effects they've given you.

I never got on well with the pill years ago and suffered awful anxiety and depression when I came off it, so I'm always dubious about taking things that mess about with your hormones, hence my nervousness about trying Esmya initially. Then when I read about the side effects and it being a temp fix, I wanted to be clear on my end treatment plan before popping pills.

Funny enough I thought I had blood clots in my urine yest and the day before but my period has just started so I'm not too sure if it's just that but I shall keep a close eye on it....

I was in a tiny cafe last week and overheard a lady talking to her friend about tablets she was taking yo try and shrink it and it all sounded fibroid related so I asked her and sure enough she was on Esmya and having a tough time. She alsohad kidney failure due to her fibroid. They're bloody evil things aren't they! Hearing all these things, reading forums and speaking to my two work colleagues has really helped me get to my end decision quickly. Knowing my fibroid is pushing my uterus into my bladder so severely also makes me very nervous about more serious complications if it's left too long. Mine has grown to 8cm in 2yrs so it's fast growing and knowing how much I've deteriorated in the last month, it must have grown more....

I'm scared stiff about the thought of surgery, in particular dying but I know it can't be left. The tricky decision this week has been whether to leave my cervix or not?! At first I thought take it out as it's one less thing to worry about but then overnight I changed my mind and thought why remove it if it's ok. From what I've read, if it's removed they have to then make a vaginal cuff? It means extra recovery time too. I think I'd rather just minimise the amount if surgery wherever poss....difficult to know what to do really.

Good for you losing weight and getting yourself ready for your next step 😉

18

Hi there,

I know what you mean about surgery but you are fit, I asked my gynie re risks & yes there are some but death should not really be an issue, if people die it is usually because of other underlying issues. He's been at our hospital at least 5 years over seeing all hysterectomies & only seen one death in all of that time which was due to an under lying heart problem. I appreciate we all know so much more now & that we worry about dvt's & pe's but they do inject for them to help & that should prevent it happening. You sound well informed, I've just been suffering & delaying because of my young son, yes life hasn't been great symptom wise but as I was told my kidneys weren't at risk, delaying it & trying medications has allowed me to have 9 years with him & enjoy his early years, but I know I have to do something else soon. My final course of Esmya finishes in April.

19

You're totally right Heather. I think my fear just comes from having lost my father when I was 5yrs old whilst he had an operation (totally unrelated of course!). Being a mum now, you just want to always protect your children so I worry about things more!!

I really hope your final course of Esmya helps and that you achieve your weight loss goal and decide on your treatment plan that's right for you.

I'll keep you posted on mine....

20

A totally understandable fear, as with life nothing is guaranteed. However we have awesome children & must stay strong for them. My Mum had a hip replacement, she's tall, slim, fit, mobile (everything I'm not! being short, fat, not fit & not as mobile as I'd like to be) She injected herself with the blood thinners yet still got a dvt, was mis diagnosed as trapped wind, ended up a PE collapsed her lung she got plurisy. However we have to be thankful as she survived something that could have taken her life very easily. So that does of course worry me (like you not unfounded worry) with major pelvic surgery blood clots can be a side effect. So that's why I've taken time, tried some alternatives & carefully considered the pro's & con's of the opinions available. However though I've had early results from my CT scan via a friend, my kidneys & bladder seem clear of any danger however I still have the cysts in my kidneys I knew about & they are probably causing the pain & possibly the blood. Also early indications show my fibroid is increasing in size which is contrary to what "Mr Fibroid" in London said & the CT also shows another issue (that I visited a private consultant for & was told issue was not there, still waited for second opinion on nhs & was told not there) that is very definitely there! Anyway onwards & upwards, stay positive, you have reseaerched & decided each of our journeys maybe be simillar in places but the end choice is very individual. Keep in touch, God's speed & best wishes xx