digestive symptoms from fibroids

Women's health
1

Hi,

Both my GP and an ob/gyn insisted that my digestive distress is not coming from fibroids--I have five big ones, which are not painful in themselves.  These doctors consider me "asymptomatic" even though I have to pee constantly, and I'm huge.

The digestion question is complicated:

I have a history of IBS--started way before I had fibroids--but it was under control for many years, no attacks.  I knew what my triggers were, and mainly stayed out of trouble.  In the past few years my IBS has gotten much worse, and I'm bloated and have cramps and not great bowel movments (incomplete evacuation) about half of the time.  I was convinced that fibroids have worsened my IBS through pressure on the bowels.  Both doctors deny this.  Recently I read an article by DoctorOz saying that fibroids DO create digestive problems from the pressure.  One of the tell tale signs is thin stools, which I definitely have.

So I would be very interested in hearing from other women with fibroids, as to whether they're having digestive symptoms they think are related to their fibroids.  The only "Official" digestive symptom of fibroids I keep coming across is constipation--which is not my case.  But I don't see how five large fibroids cannot have an effect on your bowels, which they are pressing against.

Even though I have two women doctors, I have been appalled at how they have not taken any of my symptoms seriously.  "Watchful waiting" while the fibroids gorw and grow.  I'm 55 and not menopausal and not wanting a hysterectomy but wanting to halt the growth and ideally shrink them.  The doctors are not helping because they claim I'm "asymptomatic" but actually I'm in digestive distress about half the time (often preventing me from sleeping) which I feel is (not caused by but) made worse by fibroids.

Would love to hear from anyone who has wondered about similar things.

 

2

Last year I felt a large lump in my stomach like when you are pregnant and was needing to pee all the time and had scans etc and found to have a melon sized fibroid plus two others. Put on the waiting list for a hysterectomy. Nine months later in June of this year had a total abdominal with vertical incision because my fibroids were so big. The next day when my surgeon came to see me he said that behind the large one was another good sized one that was stuck to my bowel. That hadnt been anticipated. My fibroids were on the outside of my uterus and were the size of a 24 week pregnancy and weighed approx 4 kgs. Since then I can go for several hours without needing to pee and my bowel movements are definitely better. For your doctors to say that your fibroids dont affect you is wrong but that is just my experience. It has taken me several months to recover with 3 months off work but I dont regret my decision to have a hysterectomy and am glad I will never suffer with fibroids again. Whatever you decide to do I wish you luck.

3

Hi there

I also suffer from IBS and it seemed to get progressively worse as my fibroids grew larger and larger. I went to see maybe 4 different gynacologists who all suggested either watchful waiting (as fibroids in themselves are not harmful) or open myomectomy surgery. I waited for 3 years and in that time tried Esmya, then eventually I had the open myomectomy. I noticed the difference soon after, now I dont need to pee so often and I feel much lighter and the IBS has improved A LOT. I still limit dairy and gluten and I believe they contribute to fibroids and eliminating them from my diet definitely helps. I feel 100% better and have regular bowel movements. If you can, consider getting an open myomectomy. I thought I had 6 fibroids as per the scan but surgery revealed I actually had 8. I think fibroids are one of those aeful ailments that doctors havent really found a way round because they arent deadly. BUt they are soooooo discomforting and impact quality of life. So please I advise you to seek as many opinions as possible and maybe consider Esmya or GNRHs analogues which can give you relief for a bit until menopause.

Good luck to you x

4

Sorry mean to say that I believe dairy and gluten contribute to IBS not that they contribute to fibroids. People say they do contribute to fibroids due to hormones fed to animals and also due to the fact that fibroid tumours grow from toxins in the body so any sort of bad food can contribute to their growth. That is the theory but I have only heard this from herbalists etc not medical doctors so I dont know if its true, but I eliminate diary and gluten because without it I feel GREAT and have regular bowel movements.

5

Hi I had an abdominal myomectomy this year to remove one huge and 4 fibroids. I knew things were wrong and kept being 'fobbed' off. After a misdiagnosis and 3 months of zoladex had a second op to remove the fibroid. 

Prior to surgery I had a lot of symptoms, pain and frequency urinating, constipation and my stomach constantly gurgled. Pain in my kidney area, hips and more. 

Anyway I experienced weird things that could look like IBS, however at that point I was not eating. However since my fibroids have been removed, no bladder problems, no strange stomach pains, no kidney pains. Although my recovery took longer than expected, I wish I had put my foot down more. Although I am still very tired 4 months down the line, other symptoms have disappeared. In my experience fibroids can affect so many other things! 

I suggest a second/third opinion. 

My story is a long one, but onewhere multiple doctors and consultants got it wrong. 

6

Thanks so much for your comments Bek.

What kind of fibroids did you have?  Mine are  subserosal, intramural, and one is pedunculated.  I'm not certain about this, but i suspect the variety and size of mine do not make me  a candiate for mymectomy--at least the one ob'gyn I did see said the only thing would be total abdominal hysterectomy, and she did not recommend it.  However, I wonder if she even does other surgeries???  I know it can vary alot with ob'gyns

Your comments are so useful because they illustrate to me something I've been suspecting about my digestive problems--last night I was up all night with them, and lately I can't stand to eat for fear of getting gummed up and bloated.

My GP is completely useless on both the fibroids and the IBS--the IBS is real, it predates the fibroids, but I had it totally under control until the fibroids got big, and I know the fibroiads make the IBS symptoms way way wporse.

Here in Toronto it's extremely hard to find another GP.  I had access to one Ob/gyn who also offered nothing, and said the symptoms were IBS.

So it's like I'm hostage to these two lousy doctors (I know they are lousy for other reasons as well) and I feel very isolated and stranded.  Without a different GP, I'm not sure I can make any progress.  I'm looking for another GP and seeing my current one again next week with new ultrasound results, and I'm going to insist she send for a 2nd opinion--this time to an Ob/gyn I know does min. inv surgery and one I know is good.  Problem is, even if my GP sends me, it will takes ages to see this other ob/gyn.

All this creates huge anxiety, which in turn exacerbates the IBS!

I have to say I have weeks, sometimes months with no digestive symptoms, so it is not the fibroids causing them, but they are making them worse.  I also just can't stand the sheer size of my gut.  Every year bigger, clothes don't fit, and I feel uncomfortable most of the time.

Anyway, thanks, it helps to hear from others.  I know multiple doctors can get things wrong--at this point I hate doctors, because this one is actually standing in the way of me making any progress.  The Canadian health care system is terrible.  People with money are now paying for private care, where you get the best doctors and fast!

 

7

Thank you so much for your comments.  I desperately want more opinions, but if you read my post below to Bek you will see I am having huge difficulty--due to my doctor and the Canadian health care system--getting them.  I am insanely frustrated over this, and it's why I just accepted her "watchul waiting" for two years. 

Now I'm working on seeing a another ob'gyn, but it will take time even if I get the referral.

I think in the UK you can access specialists directly?  Not here in Canada.

I am also considering limiting dairy and meat for the fibroids (I don't consume gobs, but I'd say a moderate amount).  The culprits for my IBS are wine and tomato sauce and anything greasy.  Wine is my undoing.  When I eliminate it completly I'm usually OK, but then I find I can drink small amounts again, then suddenly WHAM! I can't.  So it presents a real problem of will power.

There are also emotional triggers.  One of the worst is seeing doctors.  No kidding.

Thanks you so much for your comments, they are a help, emotionally especially, as I feel completely isolated with this problem.

I think I would like a myomectomy or maybe UFE, but first I have to find an ob/gyn who recommends it.  I have serious doubts about total hysterectomy.

If men suffered from fibroids, I'm pretty sure they would be taken more seriously, and treated more effectively.

 

8

Thank you for your response Julie.

I believe what you say, I also think the doctors are wrong about fibroids not affecting digestion--it's kind of a no-brainer.  My ob'gyn said she saw women with bigger ones than mine with no digestive symptoms, but that does not mean mine are not exacerbating symptoms.

It's helpful to hear so many women telling me their digestive prolems went away with hyst or myom.  I've bveen a little afraid of going through the procedure and not getting improvemt--due to the doctors saying they are not affecting digestion.

I am reluctant for a hysterectomy, asI don't have great support networks for recovery, and my home is loaded with stairs--not good for recovery.  This weighs on my decision.  Also, being 55, I should be very close to menopause.

 

9

Ah sorry I didnt realise that you were based in Canada. I am not familiar with the system there but from what you say it seems very different from the UK. I am based in London and here apart from being referred under the NHS you can also just google and book an appointment with a private gynaecologist. I went to see 3 different ones and they cost about £150-£200 per appointmen/session. I saw a really good one who even included scans in my appointment, he is a top gyna based at the famous Harley street. I did A LOT OF RESEARCH and some so many different consultants and I can tell you that they all said the same thing which is that if you have multiple fibroids its best to have an open myomectomy, and if you have 1 fibroid, depending on the location you can have key-hole surgery. 

I really do hope things work out for you. Have you tried adrug called Esmya (it might be called something else in canada but the acitve ingredient is called ulipristal acetate). It worked very well for me and shrunk my fibroids a lot prior to surgery.

I wish you all the best!!

10

Hi,

Reading your post, I wish I was English.  Not cheap, but at least you're in control.

Your info is very useful, already I know more than I did from seeing two doctors.  I'll look into Esmya.  In Canada we have Firbristal and Lupron, but the Ob/Gyn did not offer, said it was only used pre-op.

Also, very useful to know about open myo for multiple fibroids.  Would that still be the case where you had various kinds of fibroids, i.e. subserosal, intramural and pedunculated.  That's what I have.  I wondered if I wasn't offered myo. because of the variety.  Only total hysterectomy, and it was not even offered.

Thank you so much, helps to just "talk" about it.  The doctors I saw just gave conclusions with no explanations, and not even clear conclusions.  Just "do nothing."

Forty years ago in Canada they were giving everyone hysterectomies for fibroids.  Now they try to avoid it.  But they don't offer anything else, unless you're bleeding, or have total obstruction or want to have a child.

11

wow, i to am in London like Missy and feel very lucky with the healthcare and drugs we have access to. Esmya is available in Canada. I think it would be  good to give up gluten and dairy just to see if there is any effect. i have 5 intra mural fib's, i am quite small framed so they do protrude from the stomach. The consultant did ask if i pee a lot and get contipated so crazy your doc thinks its nothing to do with it. My gyna even said she was surprised i can eat as everything is so squashed. I do often feel very tight in my stomach when i do eat, and end up looking pregnant. My gyna said i have a 21 week size uterus

12

Thanks Fibroidy.  Esmya is Fibristal in Canada, already asked one ob/gyn for it, she said no.

The doctors are a problem ....at least for me.

In fact, just seeing the doctor was what made my IBS kick in after months of no IBS.  The stress of her denying there's a problem, her inital refusal to send me to a specialist.

When I don't have IBS (sometimes dissapears for months on end) you'd be amazed at what I can eat and drink.  Even with these roids, as I call them.

I'm a big woman, but I have the pregnant profile.  Foryears, I just thought I was getting fatter.

Very helpful to have many women on these forums confirm my digestive symptoms.  They don't come from the fibroids (because I can be symptoms free for months) but they are 100times worse for the pressure.

As I write I feel like someone has inflated me with an airhose.  Insanely bloated and uncomfortable.

13

Hi Fibroida, sorry for the late reply. To this day I am not entirely sure exactly what happened. The consultants had never seen anything like it.

My largest fibroid wax the one in between the womb walls (sorry can't remember the technical term). The other ones I have no idea, was never told either. 

With me they initially told me it was an ovarian cyst, but after emergency keyhole to remove it. They discovered it was a fibroid so large and vascular it could not safely be removed. I then started 3 months of zoladex to shrink it. During this time my symptoms got worse, the pain was excruciating and I often took 20 painkillers a day. 

On my second surgery, they opened me up to find it leaking into my body. The fibroid had degenerated so much the inside had turned to 'mush.' (That's how they explained it).

Anyway, turned out the zoladex would not have worked. Lots of bad symptoms with that too. They drained over a litre of fluid out of the fibroid and then removed it. It filled my womb and protruded out the back by 15cm. 

It was so large it pushed on everything, kidneys, bowel, bladder, spine etc

Thought it would be a hysterectomy and they did say that may be an option. As mine was not a straight forward case i can't say that my experience is typical of everyone else's. However feel free to message me if you want more advice. Having come out the other end of it all, I know how stressful and frustrating it can be. 

14

Wow Bek, you have been through the wringer.  I am so sorry to hear about what you've been through, and reading stories like yours and others on various forums, I realize my symptoms are indeed mild compared to most.

Reading so many stories I see they are all so different--different kinds of fibroids in different locations in different women of different ages with different symptoms.  What we all want is the same though: releif.

I hope you're fine now?  Did you manage to avoid the hysterectomy?  That is my hope.  But I don';t want to spend the rest of life with large fibroids and GI distress.

15

Hi Fibroida, tell me about it! I got married abroad 2 weeks before my wedding. Lost so much weight I had my dress taken in numerous times. The plane flight was unbearable with the pain. I couldn't drink or eat on my wedding day and had to leave early. Total nightmare. Also had to organise and cater for a party 2 days before my op. I guess it gave me something to look forward to. 

I really researched my hospitals when I chose it. Looked for a specialist in the area of Fibroida rather than a general gynaecologist. That worked in my favour to some extent as the consultant was great, although I think collapsing and ending u on A&E the first time worked in my favour. The downside was the appointment system. It was a trainjng hospital so I saw quite a few students which was fine. Although on my first appointment after my scan a registrar examined me and asked the students if the wanted to feel an 'abnormal' womb. They had a really good poke army fibroid which was horrible (at this time they still thought it was a cyst).

That said couldn't fault my consultant. A hysterectomy was a possible if the fibroid hadn't shrunk. I think the fact that they were able to drain so much fluid out reduced it to a manageable size, making it easier to remove. She really was a specialist. 

The fibroid was so large due to a mistake in medication given to me initially when it was flagged up, causing it to grow rapidly. 

I guess I was just lucky, my right ovary had been pushed up very far and they were worried about the damage done. Luckily all ok. 

First of all find a specialist in that area not just a general trained consultant.

Secondly get a second/third opinion. One doctor told me those who yell loud enough.....!

Thirdly we have something in the UK called PALS. You can make a complaint against the hospital and they can investigate it.

Finally insist on everything you can. They would not do quite a few standard things (MRI scan) for me. This may have stopped a lot of unnecessary treatment, in my case causing temporary menopause. I ended up on HRT for my wedding day, just to feel well enough to go. 

Lastly there are lots of medications to shrink certain types of Fibroida. Find out whether they'll be useful for what you had. Think about the pros and cons.

I think for me, I am now 34, being child bearing age with no children was a very big factor in a lot of decisions made. 

Lots of information and complaining, you are not alone. Keep researching and find out what is available, what questions you need to ask etc. 

I hope that helps x x

16

That should say I got married 2 weeks before my operation! 

17

MY God!  What an experience!

I appreciate your advice and know it is all god advice.  I'm guessing you're in the UK?

The stories I'm hearing from women in the Uk or US are so different--here in Canada it's kind of the dark ages re. treatment options and especially access UNLESS you're loaded with money and can circumvent the public health care system, which I am not.

I saw one Ob?gyn who offered nothing.  There is no sub-specialization in fibroids.  I have done extensive research to try to find an ob/gyn in Toronto who is good with fibroids, has a repputation for that, and I have uncovered two names, who are two of the most high powered ob/gyns in the city.  Now I will have to fight with my GP for a referral--she didn't even want to send me to the first ob/gyn!!! (I know I need to change GPS I'm working on this too, massive shortage of GPs in Toronto, not easy) and IF I get the referall and IF they are taking new patients, I will still have to wait ages, I don't want to guess but it could be a year.  Women with cancer, bleeding and severe pain all come before me, as they should.

So that's what I'm up against.  Just thinking about it, aggravates my IBS, screws up my gut, then I wonder if the symptoms are IBS or fibroids (the doctors all say IBS, but I know the fibroids are making the symptoms way worse, and perhaps triggering the IBS) so sometimes I do better to just not think about it.

Another thing is I'm 55, should be close to meno, and have tricky fibroids to deal with.  I know a good specialist like the ones you saw could, but I don't have access.

I think if I want anything it's UFE.  I still need a referral by an ob/gyn.  In the meanwhile I'm looking at some natural alternatives, including TCM, and a variety of supplements, enzymes etc, maybe making the big dietary changes everyone talks about.

The meds used here for fiborids, Fibristal and Lupron--are typically used only for pre-op.  The SEs sound awful, not sure it would be worth EXCEPT if you meno came soon after so you got extra shrinkage for the long haul.

Thanks again!

Thanks again.

18

Hi Fibroida, yes I'm in the UK. I'm surprised to hear about Canada's health care.

I experienced similar to you. I waited a very long time for everything. Over here the wait is 16 weeks from referral. I saw doctor in December and ended up waiting 8 months. 

The nurse talked to me about Uterine Embolization, although the consultant said no due to me being child bearing age (that seems to play a huge factor in it all). 

I can only say that had I not seen the consultant via A&E I am not sure what would have happened. At that point I couldn't walk due to pressure on my kidneys. 

Keep trying as hard as you can. I really suspect that if there is pressure on your bowels that is making things worse for you. Definately be careful with your diet. I had to stop eating anything starchy as from a digestive point of view it was just painful. 

Does Canada have anything like we do over here where you can make a complaint? 

Good luck. 

19

Thanks again Bek.

I do intend to compain, loud and long, about my GP once I get out of her grips.

I see her later this week to see my latest ultrasound, and decide what do next.  I want a consult with a 2nd Ob/gyn.  If she doesn't give it to me, I'm going to switch GPs.  But that will take time too!

I do have a plan.  Want to try some alternative, natural approaches while I'm waiting for the 2nd ob/gyn--can't hurt.  Just costs money.

I have nowhere near the kind of symptoms you had or most of the women on these forums have.  I can walk just fine, but sometimes have cramps.  They're bearable, but I don't like them.  My big fear is the fibs will keep growing and then I'll have the kind of problems I read about.  Want to not let that happen.

Actually seeing my doctor makes me worse!  My guts go haywire.  That's why I skipped my appt last year.  She had nothing offer anyway.

But I now know I need to do something to prevent further growth.

20

Oh my gosh, you're in Canada you say? I can't believe you're not getting the help you need? Bek also has very experienced advice! I didn't realise how badly my fibroids had been affecting my bowel, ect, until now I'm 2 weeks passed my hysterectomy! Of course those big fibroids are pushing on everything internally! For the first time in years my bowel motions are normal. I was starting to think I had bowel cancer or something. I'm 49 and like you thought maybe menopause might shrink them but I wasn't yet. My Dr put me on Zoladex in order to shrink them which started to give me bladder and bowel relief by the 2nd month. I didn't want to have a hysterectomy nor did my Dr want to do it. I had suffered with endometriosis and migraines, had 2 IVF children so had to weigh up pros and cons. I decided hysterectomy which was done via laparoscopic and vaginally! Haven't looked back. That fibroid was still grapefruit sized even after shrinkage. I'd had several ultra sounds to check fibroid size months pre op. You go chase a GP to refer you on to the specialist of your choice! You have all of us here to confer with your tummy troubles x Debbie 💜