I started my journey thinking I was pregnant with no period for 2 months it was an exciting time until my third month discovering I not only had my period but the most painful yet.
I had terrible nausea every day, stomach very sensitive and sore to touch, I had up and down moods mostly crying at a drop of a hat. exhaustion and breathing problems - I would be out of breath even walking for a short period of time. As well as going to the toilet more often - IBS symptoms in my mind and wanting to urinate more.
I thought whilst feeling pregnant overjoyed at the symptoms and after an internal scan and blood tests they discovered fibroids (3) egg size - in my womb wall and a 3cm cyst on my ovary.
Until this time I always had bad periods but no real symptoms like this and now I have constant symptoms and feel my health quality has taken a real bad dive. I told the doctor who agreed and said they will monitor me. He however tested me for bowel disease even though I knew it was linked to the fibroids.
My concern is especially when going to Edinburgh for break with my partner I had to keep stopping and starting up hills with my breath etc does anyone have shortness of breath with this? When I google they say it can be a symptom but I am seriously getting worse over time.
I did body coach before was much more happier but I so want to get back to being the way I was and feel a long way off.
I have been asked to get my second scan results soon but the guy who scanned me asked me if I was in pain or if I had an op before on them? I know and feel with increased symptoms things are not great so not sure what to expect.
I would love to hear experiences and love this page its been a real support to know you are not alone . Thanks
Just to add I get lots of pelvic pain as well and pains in the left side, it feels like a stitch from the pelvis up. Its been a real comfort to see symptoms listed with other peoples experiences so I hope by posting this someone will feel not alone with things.....
Hi Emma I suppose I did have shortness of breath along with all the other symptoms, I guess that becomes inevitable with weight gain and swelling of the womb, that's what I put it down to anyway!
I'm so sorry you feel rubbish. My GP found my fibroid by accident because I went to him feeling lightheaded and like I was going to faint. I have since been tested for a lot of things and I mean, a lot! I get what I can only describe as an adrenaline rush and my heart races, I feel dizzy or rather lightheaded like I cannot support myself and have to sit down, my hands go a blue/grey pale colour and I seem to have this in waves. I never truly feel 100% but sometimes its bearable. My fibroid is 17cm, pretty much round so its about a small melon, and I just have 1.
I feel like they have missed something with me like maybe POTS or some kind of autoimmune disease. I too am due to go on holiday in 8 weeks to Australia but I don't feel I can go. I just know I'm going to feel shocking and ruin it. I am planning to return to my GP before then to discuss the shortness of breath feeling I am getting more of late. I am never gasping for breath and am not truly out of breath but my breathing feels odd like I may stop breathing. My arms hurt sometimes I have a sharp pain in my chest for a few seconds.
Many people tell me this is because of the fibroid as I have been tested for everything else but the professionals tell me a fibroid cannot do this.
What I would say is don't give up if you think something is being overlooked, don't end up like me because I am working myself into a frenzy and I have been like this for 2 years!
I65195 your fibroid is classed as a very large one, this will ha significant affect on your life especially I would have thought during your monthly cycle & bound to result in increased blood loss. I have a 13cm fibroid which I have seen a number of medics about re different treatments but seemingly no matter where I go because I'm 47 they say get a hysterectomy, they say you've no more use for your womb & it's safer than a myomectomy. (Re blood loss, complications of surgery re regrowth of fibroids etc) I too have been tested for a lot of things sharp chest pain like you describe & though even misdiagnosed by 2 cardiologist (one which I paid for) the first twice it appears I have a 1 in a million chance pericardial cyst, that may go some way to explaining my chest pain, or costachrondritis is this other option they've given me, but I have a large fibroid so who knows. I also feel dizzy & light headed, I must be anaemic with the blood loss, however even liquid iron upsets my digestive system & whilst I would struggle with an alkaline diet full time, I make a smoothie in the morning to try to naturally keep my iron levels up & even for me, it actually tastes ok. I use a couple of handfulls of spinach for the iron, Lemon juice from a whole small lemon, 1 avocado, 1 banana & a cup for coconut milk, blend it with ice (trying to keep it organic where I can) & though it's green it's really nice. If you make a big batch pop it in the fridge for later. Filling healthy & full of iron, which may or may not help your shortness of breath or dizziness but both of those are symptoms of anaemia, which many of us fibroid sufferers are, or if not have low iron/iron stores. It may help. I find clean eating (green) to hard, but I try my best, because it's gotta help in someway. I have to see a consultant about autoimmune disease next week, fingers crossed it won't be but I seem to tick many of the boxes with symptoms. You feel like you are going round in circles, then all of a sudden a scan or a test shows up something incidental & boom, what you've been feeling for years make more sense. I think it would be common sense to assume that with fibroids, our hormone levels are off par & that the alien mass will inevitably cause nerve impingement, muscle issues, inflammation - for example if a lady can get S1 joint issues when she's pregnant how about carrying something the size of a baby for 10 years! Has to have an impact. I truly don't think "professionals" can know exactly what a fibroid does do to some people, as we would expect some symptoms from our massive ones, but I have also heard from medics that ladies with grape sized fibroids can get horrible symptoms too. After being told I'd be unlikely to have kids with it &(hubby low sperm count too) I did fall pregnant first time, so they aren't always right as I'm living proof of with my cardio referrals, I went with shortness of breath. Only thing I would say to both ladies on this thread is shortness of breath is a symptom with other things, so it would maybe be a good idea to have a heart check (if you have not already had one) though as I am living proof of even cardiologists get it wrong (in my case both nhs & private) One important thing I will say however, trying to reduce the size of these things on various drugs or being on the pill a long time, (I wasn't on the pill a long time) but did take Esmya & Zoladex over a 3 year period to try to reduce my fibroid which nothing did, but did end up with an enlarged liver cyst, which the specialist did say could be hormone related or due to the fibroid drugs, re oestrogen level. It seems to me that I could have made a lot of things worse by trying the drug treatment route. Or by having a fibroid & not getting it out, can it cause other things? I don't know the answer to that but I do think that fibroids & the symptoms they cause aren't dealt with effectively enough for so many sufferers. I feel I lived with it while it grew & grew because the options weren't explained to me, if they had have done, I would have chosen a less invasive route when it was smaller (mind you some of these things can grow fast too) But I too had the adrenaline rushes, heart races, palpitations, so reading your post too< it makes me think that the effect of fibroids could be responsible for more than we think. I too never feel 100% either, I have one single posterior wall fibroid, intramural (in the womb wall) I also feel I bruise easily, am sore to the touch, bloat (have now also cut out most carbs) that my fibroid goes hard & soft, feels like it drags & pulls down sometimes but not others, rush for a wee all the time, have crime scene periods. Have numbness in hands, (especially on waking) am more clumsy, feel stuttered breathing on sleeping, exerted easily on climbing stairs, have a sensation of moving when I stop (mostly when on period) pain in legs & tummy, stiff & sore joints, back pain, hip pain, S1 joint pain (can understand that though as every time I bend over it's like I'm bending over with the pressure of a baby inside me & have had for well over 10 years, so if ladies can end up with S1 disfunction after pregnancy then hey ho! There should be more specialist help for us, more clinics & tests, forums, they can actually find out why these things blight womens lives so much. It's not "just" a fibroid, many people have them, it can be a really awful thing to live with & there should be routine scanning early on so ladies aren't left feeling I want kids but can't have one as I've got to have a fibroid procedure first or worse have to have a hysterectomy, when they could be dealt with more conservatively if found & explained earlier. I don't know about you guys, but if I'd been told there was a laser procedure I could have to reduce/kill it off but that I'd have to pay towards it, I'd have done it 10/15 years ago, but I wasn't told that. As often the fibroids causing the real problems have grown to a size where the options are more limited but the patient has been suffering for years.
I feel for you and reading about what you are experiencing and its such a dream holiday I hope you get to go to Australia. I totally identify with what you have said and I work two jobs and the dizzy thing is often for me. Like you I feel something is so not right and I internet search and frightened myself with ovarian cancer descriptions but I know Fibroids are very similar in symptoms so have taken a deep breath and like you said keep asking questions with the GP and get things checked out.
When you say the breathing is odd like you may stop breathing that's exactly what I get. I thought a rest and a little break would somehow take away symptoms but it made me realize I am poorly and its not exhaustion or tiredness this is my body saying something is up.
Thank you for your kind words... Keep asking and pushing until you feel more like yourself again - I plan to do the same.
Yes, I had shortness of breath and pains on my right side. Those demon fibroids do weigh us down. I felt like everything went down hill too with my health but I’m determined to get back to normal after they have completely shrunk and scarred off. I had my UFE in Mar.
I agree Sheila we a have to fight it and not let it beat us. I am thinking of UFE moving forward depending on whats said on my next GP visit. Fantastic you have had this and on the road to feeling better. The shortness of breath is a clear symptom with Fibroids for sure.
Wow it's so nice to chat to someone who gets it, my friends absolutely do not! Have you been told why a fibroid can make you breathless? And how on earth do I convince myself it's that when my go is telling me that it's not?
Just lots of online research like you I am finding different responses. With my symptoms my GP sent me on tests for other things and my blood tests are clear. My hormones are even balanced fine and thyroid and not going through the change. I never had any of these things before only since I had the pregnancy symptoms. I know when I say about my breath my GP will test me for other things. Frustating but will do it then go back. Friends outside of mewith fibroids without symptoms say it does thing to your head knowing it’s inside you. I know however it’s not in my head I’ve felt poorly with it and I’m simply not the same person I was. I totally identify with what you are saying.
It could be two different things. I had something similar. I also have bad fibroids. But my breathing was a different issues. It took 4 specialist and 4 years for them to discover that I had scar tissue growing across my throat under my vocal cords. They couldn't find it because it isn't always caught on a cat scan. They had to put me out and look around to find it. It's an uncommon thing that affects mostly women in their 40s. Here is a test that might be helpful. Do you have trouble when you breath in or out? Apparently asthmatics have trouble breathing out, but I had trouble breathing in, which is a sign that it is not asthma related. I hope you find your answer. For your fibroids, use a magnesium spray as a magnesium supplement. It will help with your symptoms and you could always try Fibristal/Esmya. It is often helpful for symptoms and could help reduce the size of your fibroid. The only side effect that I get from it is I get tired, but it greatly reduces the pain I get and I don't have a period while I'm on it. If you drink alcohol you may want to try cutting it out. I recently discovered from experience that this effects fibroids.
Thanks so much Carol for your advice and that’s such a great help. I do think it’s breathing in so I will make a note of this when I go to my GP. The supplement and Fibristal sounds good also I will look into this. I do like a glass of wine so it’s frightening to think this could be contributing. Such a great reply and very helpful.
I agree it's a shame, maybe it's my own fault for waiting til I was older to have children, it's have been found then but now I face not being able to have them if it all goes wrong. I feel even the specialists you see aren't really sure,I've had very confusing and sometimes conflicting information fr them and it's not to you get out of the appointment and mull it over that you think, hang on that's new info! I have been told I now need to decide between the op or not, do I want children before or chance it and try after. They seem to constantly tell me that the symptoms I'm having aren't from my fibroid but many people on here seem to describe similar things to me; really helps to know I'm not alone in this boat, we're all in the same! X
Hi - I too can fully related to this post. I have a few large fibroids and a bunch of tiny ones. The largest being 10+cm (subserosal exophytic (sticking out of uterus but still hasn’t ‘flown the coop’ so to speak). I also have asthma (since childhood). I also am having a harder time breathing as ’the gals’ get bigger (shortness of breath/gasping for air etc). I am not a doctor but I used to me an EMT and we do cover asthma as it is often an emergency issue. While clinically speaking it is true that the problem with athsma is that you aren’t breathing enough air out, the symptom is feeling like you can’t pull air in. Stale/useless air gets trapped in the lungs and the fresh air can’t get in. So no asthmatic I know has ever complained of the sensation of not being able to take a deep breath out, it’s always the ‘in’ direction that feels awful for us.
Now again I’m not a doc but I am a biologist employed as a research biochemist at a Med school, and sadly basic biology and biochem seem to be the classes most of the Med students ignore, memorizing just enough to pass. With the bit that I do now about biology and biochemistry I think that it is reasonable to assume that these beastly bowling balls/grapefriuts/melons etc could be causing breathing problems in several ways... the first most obvious is the effect it’s having on our diaphragms... located in the abdomen and just as important as the lungs for breathing. If it’s getting pushed on it can be harder /more of a concious act to breathe than usual (a common complaint of late term pregnant women). Another way it may affect our breathing are the biochemical affects (which would take too long to get into just now but are very real problems). One personal example of this that I will point out is that due to certain transcription factors missregulated by my tumors... I have had awful itchy (often 1/2 my body) rashes that come and go for ~3.5 years. No doc has ever figured this out mind you, cause it’s ‘not their specialty’ - even the allergist said that 🤬! The reasons I believe the fibroids are causing the problems: 1)all the previous testing on me that they did to rule everything else out and 2)that it started around the same time as the heavier bleeding and more painful periods, IBS problems, weight gain etc. 3) if you go searching enough it is in the medical literature as a possible fibroid complication.
Also I just want to point out (and please forgive me if I’m wo’mansplaining but I wish someone had told me) that the anemia caused by the heavy bleeding isn’t just a lack of iron problem, it affects lots of things.
Another personal example is B12- there are all sorts of complications for how they are currently testing and diagnosing B12 deficiency but it can cause some types of anemia (while iron levels are normal). In this thread I noticed some people mention numbness and tingling in the hands/feet- b12 is often the culprit here (when there is heavy bleeding) with far worse symptoms (neurological etc) possible.
So if you suspect this may be happening to you for at least this one symptom, you can treat yourself with sublingual (under toungue drops) of b12. The doc Rx shots are prob more effective, but I got fed up with their arguing with each other over the standards and decided to take the over the counter drops and no longer have the same numbness tingling problem.
I should mention too- that sadly much like the fibroids if you don’t know about it or are told to ignore it, over time b12 deficiency if left too long can morph into a much bigger irreversible problem causing permanent nerve damage.
Sorry for the rant but I hope that’s a little helpful.
Thank you for your post and everyone’s replies it makes all of this less scary knowing I’m not the only one.
Merz, hear hear! It's incredible how doctors have no clue these days let alone no care. It's bloody common sense really but they continuously fob you off almost as if having no DR as a title makes you clueless. I believe in seriously listening to one's body and when you feel something is wrong, something is surely wrong. Fibroids take so much out of a person, doctors have absolutely no right to tell a patient, fibroids don't do that unless they can speak from experience. A friend of mine had a hysterectomy and she too said she experienced breathlessness and heart palpitations (which I'm experiencing too) and after the hysterectomy, the symptoms disappeared. I'm not keen on hysterectomy and I don't think any doctor has the right to tell a woman that's your only option particularly due to your age, just to make life easier for them. WHY IS NO ONE FINDING A REAL SOLUTION? If men were going through this, believe me a solution would have been found years ago! We need to get a Women with Fibroids Matter movement going and our voices heard. I'm sick of the complacency! Twitter here I come!