10cm fibroid & MS

[Pinky777]

Hi I’m a 35 year old with 2 children. I suffer from MS but I manage this well by eating correctly & looking after myself & I received a chemo treatment which massively helped! I was having trouble pain heavy periods & anemic & was back & fourth to the GPs however all that was coming up was I was anemic. Honestly felt like a hypochondriac but I knew something was wrong with my body. A scan picked up a 10cm fibroid all I know is that it was on the uterus. I thought I would be waiting 3-4 months to be seen as a red flag emergency this is pushing on my organs & making my MS play up. I rang & ive a 9 month wait & that’s as an emergency I’m only 2 months in I don’t think I could manage the symptoms another 7 months just to be seen for a consultation!! Any advice would be greatly appreciated no one seems to be able to help I just hear the option go private but financially that is not an option right now I’m already off work with all this. Any help would be greatly appreciated thanks for taking the time to read.

[Skye22]

You could ask if you could go on the cancellation list you may be lucky and get seen quicker. You could also ask your GP to contact your consultant if your symptoms become more problematic. Wishing you good health and hope you get the treatment that is good for you.

[Pinky777 in reply to Skye22]

Skye22 Thankyou for your reply I will try this too if they got a cancellation tomorrow I’d take it I had my period this week & the pain was horrendous periods are now becoming irregular & late they were once always regular. Thank-you so much and you too 😊

[KimG21]

Hi Pinky - sorry to hear of you having to suffer with this. I had a large fibroid as well and depending where they are they can cause horrific bleeding. I too was also kept waiting for along time and the bleeding was that bad I ended up having to get a blood transfusion. I am in Scotland I contacted what is called patient affairs and told them my story. I basically laid it all to them my symptoms, the lack of response I was getting from my consultant and also that there was a sense of urgency for surgery ( I wrote the actual levels my blood count dropped to) I was just very matter of fact and they were very helpful in getting me seen within four weeks. I had a hysterectomy but I know this won’t what everyone wants but it was the right choice for me. Write to a similar department or complaints and explain what is happening - eg uncontrollable and unpredictable bleeding, becoming severely anaemic, not going out, affecting your job and life, and you also have two young children to look after and you can’t manage etc.. if this is the case, which I am sure it is otherwise you wouldn’t be on here 💕present to a and e if the bleeding gets bad as well. Don’t be afraid ti advocate for yourself , what have they given you to take in the mean time? Xxx

[Pinky777 in reply to KimG21]

Hi Kim, Thank-you for your reply. I read on a thread someone recommended asking for your report I might do this too as all I know is the size, some comment about the left ovary & a bulky uterus. Sorry to hear you needed a blood transfusion I hope things are better for you now after your hysterectomy. The pain is getting worse each weekend fizzy drinks set it off & starting to feel it really press hard on other organs. I was referred as an emergency on 13th July i haven’t heard a thing it’s been suggested about going private & another GP suggested they were harmless just feel a bit dismayed by the whole process I am thankful to the GP who referred me for the scan as others were just absolutely no help if anything I came out feeling worse. Thankyou for letting me know about this I didn’t know I rang the waiting line so 9 months from July would be into next year just to be seen for a consultation, no I didn’t know where to turn it’s affecting every part of my life. It is only me & my youngest daughter in the house & she needs me to be in good health. All they have given me is naproxen & painkillers that’s it but then been advised naproxen can cause bleeding from the bk passage which I’m having too again on a red flag waiting list but heard nothing at all. I need to get better at advocating for myself I’m not v good at it & not many other ppl help re this something I’ve learnt recently sorry for the long reply xxx

[KimG21 in reply to Pinky777]

don’t apologise at all, I like detail! It’s good to talk on this i as there are a lot of woman been in the same situation who will help. I wasn’t good at abdicating for myself either, I spoke to some people who have me a shake and eventually I started standing up for myself. It’s just not accepting bare minimum which just giving y our pain killers seem to be and waiting months while in pain isn’t acceptable. And the stupid doc who said they are harmless- yea in some cases they are and they aren’t cancer, however they cause horrendous symptoms for some woman and they need to sort it out. Just keep sticking to your point when you talk to them - that pain killers aren’t a solution and you need something done sooner and it’s having a detrimental impact on your health, life and job xxx

[Pinky777 in reply to KimG21]

KimG21 yes I’m so glad I found this site it has been beneficial talking I am now planning on ringing mon AM because the pain today was horrendous & starting to get chest pain & indigestion. Going to pester them all week ask for the report & cancellation list but look at private too basically cover all bases. You are so right I told my mum that today I’m going to fight & stand up for myself as I’ve no quality of life atm & it’s not acceptable. So true they fob you off & if they don’t have them they aren’t speaking from experience. I will do I will keep you posted I left my job at the start of June that same GP said she thought it seemed a bit rash before it transpired I had this 🙄 (my job is stressful) NHS is a shambles atm & doctors just do not seem to care the majority not all of them I’m sure. I had a bath & naproxen & thankfully the pain has settled for now xxx

[Bassem1979]

Hi

I was told in April I had multiple large Fibroids around 5cm each not sure how many just said multiple.

I was but on Zoladex injections to shrink everything stop the bleeding as like you guys the bleeding is horrendous. I had 3 injections and stopped because of the side effects yes the bleeding stopped which was good but other things weren’t.

However now my first period was 15 days heavy bleeding with large clots now have to be in iron tablets again just to low blood levels.

My bowels are playing up again constipation, taking oral laxatives gives my bloating and cramps I look pregnant. Am not sure if they are pressing on my bowel or I have more serious bowel issues. (Cancer)

I keep getting what feels like electric shocks in my abdo and groin area

Am eating a hysterectomy which has only been 4 mths and I feel so low with the pain, discomfort and my bowel.

I really don’t know how long I can go on like this as it all started last November.

[Abeceda]

Hi, I feel your pain. I have been diagnosed with large fibroid - 17cm 2 months ago and was told by NHS gyne consultant that waiting list for hysterectomy is 2-3 months in my case- I was quite ok with it, signed the consent form and called the hospital 2 weeks later. They told me that in reality the waiting list is more than one year wait!! I nearly fainted as it makes my life impossible. Luckily I have a private insurance through work and I really have no other option than use it. I will now have my op in Nov. Countig days now, I still work

Please try to call them and keep explaining your problems even every week if necessary. Its not the same with 10+cm fibroid. Its just pushing everywhere. I cannot even eat a proper big meal as it doesnt fit in or drink enough water as I need to wee constantly. I wish you good luck and finger cross you can push it through faster!!!