Pelvic Pain Support Network
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Large Fibroid In uterus

Large Fibroid In uterus

I'm 26, and have just been told following my Ultra sound that I have a 15cm Fibroid growing on my Womb. I noticed back in June 2017 that the bottom of my stomach was rock hard, but I just put this down to being due for a period. However, with each month that passed I noticed a large bump appearing and when I stood up, I looked a fair few months pregnant. I haven't had any children, however knew that it definitely wasn't a pregnancy. I have had severe pain and heavy bleeding during periods, severe lower back pain & am now struggling to bend over to tie shoe laces etc. I have been told that due to the size of my Fibroid, it has pushed my ovaries and bladder out of the way, therefore, my ovaries are now under just below my boobs and my bladder is on the side of the body. I have been told that I will be booked in for emergency surgery within the next 2 weeks because of the size of the Fibroid, so I wanted to know if anyone else has experienced this, has been through the surgery and how it was, what the recovery time was and how you felt afterwards? I have added a photo which shows the lump I have at the moment and would appreciate anyone's feedback that has experienced this and the surgery before.

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I am experiencing the same sort of lump on my stomach next to my belly button. I am 38years me and my partner was pregnant when one of my 4 fibroids grew, unfortunately to the fibroid growing it pushed on the baby killing it. We were told after that we should be able to get pregnant again as the fibroids showed as small. However since then we have been trying with no success, and in the last 2 months I can feel one of the fibroids growing bigger as I can feel it growing in my stomach. My lump isn't as big as your photo shows, but when I lay down I can feel it's big, I've been asking for someone at the hospital to see me so we can try to shrink them so we can have a chance of having our first baby, but now I feel they are so big I read the doctor is going to say they have to do a hysterectomy. I was hoping you could tell me what kind of surgery you are going to have to remove yours. I wish you luck that everything goes well.

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Oh that's awful! have you tried going straight to your GP and being referred to the hospital? that's what I had to do, as the hospital wouldn't do anything unless I had been referred?. Im having a Myomectomy surgery, so they've said. I just don't know what to expect so its a bit scary. I haven't got my date for surgery through as of yet, but its meant to be through within the next seven days, but i'll post another post once ive had my surgery. I hope you get yourself sorted and have a little baby soon! all the best :)

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Hi thanks for replying. I've just been referred to the hospital this morning, I've also been put in for a scan in the next two wks so I'm hoping to finally get some answers soon. It would of been nice if they done something over a year ago then the fibroids wouldn't of grown so big, but hopefully I ll have something done soon now the g.p has finally referred me. Good luck with your surgery, everything should be fine, just keep positive.

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Ahh that's very good news, I think that's the only reason they have been quick with mine, as mine is 15cm at the moment and still growing. I should have gone months ago, but I just hate the doctors so avoid at all costs. but glad they are moving with you. Hopefully you get all sorted :)

thank you :)

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Good luck with everything let me know how everything goes I ll keep my fingers crossed for u as well as for myself. Good luck

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Wish you well with your surgery.

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Hi! I had fibroids, nothing like as large as yours, but extremely painful. I was in my mid-30s, had not had children but did not want them. I had a hysterectomy, was in hospital for a week, my husband stayed home for a week afterwards as I was so weak. Six weeks off work, but more than 2 months to recover. However this was 30 years ago, so techniques may have improved. I had air embolism in the scar, and suffered from pelvic pain for years afterwards, tried everything including acupuncture until a physio managed to defeat the pain. 30 years on I had surgery for bladder cancer and the pain is back, now more or less controlled by pills. But no doubt I was exceptionally unlucky and the outlook is better now.

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Hi all, I completely sympathise with your condition , having just had a massive fibroid removed 7 weeks ago. It was causing severe pain and ridiculous heavy periods that never stopped, to the point I suffered from chronic anemia. The surgery was quick and relatively pain free, my life has changed and I feel free. Hopefully all goes well for you.

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That’s really good, how long was you off work for? And how long was you in hospital for? And was it keyhole or like a c section surgery? Sorry for the many questions.

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I had the opp under general anaesthetic, the procedure was a TCRF, wasn’t keyhole but they went through/up vagina ( hence glad was knocked out ) I was in hospital for a day and signed off work for a week. The after pain was fairly mild like my normal period pain , with some bleeding but nothing like I normally experience. The general anaesthetic made me feel a bit woozy but that wore after a day or so, and no heavy lifting! Have they told you what procedure you would have? I put it off for ages as I assumed it would be horrendous , but so glad I did it.

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Oh okay, they haven’t told me anything yet apart from the fact it may be a csection type of procedure because my fibroid is too big. But I put off going to h the doctors for months, I found my lump back in June but was just too scared. I’m hoping it’s not as bad as I’m thinking. I have my pre-op on the 30th November so I I’ll know more then x

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Whatever procedure , I firmly believe you will be much happier! Be brave be strong! This is actually quite common , you are not alone x. Let me know how you get on

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Like you I was diagnosed with a very large fibroid (16cm x 11cm). I had gone to my GP a couple of weeks before Christmas with chest pain! I had blood tests to rule out ovarian cancer, ultrasound and mri which established that I had multiple fibroids and that the large one was pushing up into my gastric area hence my chest pain. This Tuesday I had a total hysterectomy and both my ovaries removed as well, all done through a bikini line incision. Depending on the location of your biggie you may need a vertical incision. I came home on Thursday after two nights in hospital. For me the worst thing has been recovery from the anaesthetic! It made me nauseous for a little while. I’ve been signed off work for 6 weeks and been told not to lift anything during that time. I was extremely anxious before surgery but the staff nurse who carried out my pre op assessment reassured me hugely as did the surgical team. The best thing to do is talk to them honestly and they will help you. I am still on painkillers and am very tired (sleeping 12 hours at night plus a couple of naps during the day), I don’t have any stitches (glued) and have had no bleeding at all. I’ve assumed that’s because I have no stitches. Yesterday I had a shower! My next milestone is use of my bowels as I’m constipated, a very common side effect particularly as I am using codeine to manage pain. On the subject of pain I was very uncomfortable for the first 24 hours or so after the op under my rib cage. I think is because my stomach and bowels had to rearrange themselves in all the space they’ve just been given. I used Pilates breathing techniques which helped to make breathing more comfortable. After that I had shoulder pain (again very common according to the nurses). That’s gone as well. My pelvic area and stomach are now soft as they should be, and now that the post operative swelling has gone down my tummy is noticeably smaller. I am looking forward to feeling less tired in the coming weeks and months - my consultant told me that having fibroids especially large one is very tiring as they take a blood supply. Oh I nearly forgot, you’ll be fitted with compression socks before your op so you don’t get blood clots. You’ll be advised how long to wear them for. Also having daily injections (2 weeks and do them myself) to keep my blood thin, also to protect against blood clots.

Well hope that helps!

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Thank you for your reply.

I haven't yet had my operation date through, its been 5 months now and im getting very impatient. The pains seem to be getting worse, periods, back pain, lack of sleep etc so im hoping it come soon!

Are you UK based?

Also, how long was it before you were able to get up and walk around, or at least not be in pain? I am more worried about the recovery more than the actual operation. Sorry for loads of questions!

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Hi, I’m due to go in for my operation on 17th Sep was supposed to be 18th Aug but that one was cancelled. I am having hysterectomy with both ovaries being removed too. I’m so nervous as I feel that I haven’t really been given an awful lot of information about the op. Did they speak more to you about it at your pre-op? They have also said I will need to go on HRT as I will go through surgical menopause. That’s a little scary having to inject yourself, I hope I don’t have to do that

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I was absolutely terrified before my surgery, convinced I would die on the operating table! Seems funny now but it wasn’t at the time. What really calmed me down were the pre op people especially the staff nurse who was so reassuring and practical. This is the time for you to ask questions, also if you see your consultant again beforehand the op go armed with a list of the things that concern you no matter how minor or daft you think they may be. It’s important that you go into surgery feeling calm and positive.

Sorry but you will have to have blood thinning injections, you can get them done by your surgery nurse if you really can’t do it yourself. I am incredibly squeamish but I managed, it took a few days to get it right! You need injections for two weeks post surgery. You’ll also need to wear your compression socks for this period. Not stylish!

Please keep in touch, ask me anything you like xx

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Thank you so much. I’m not sure that I’m booked in to see my consultant again. My MRI results went to MDM which was terrifying enough as nobody would tell me anything, then my consultant could have been telling me to go for a haircut rather than I’d be losing all my female organs, and that they couldn’t be 100% they weren’t cancerous, which is why they decided to remove everything...............have been doing the dreaded google searches (I know worse thing to do).

How long before your actual op was the pre-op?

Did your GP talk with you, as I’ve not heard from mine.

Thank you so much for the reassurance 😁

Glad yours went well and you are on the road to recovery now xx

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My timescales were very compacted, I went to my GP ( who suspected ovarian cancer as my largest fibroid was so big, hence the urgent referrals) in mid December and had my surgery on 6 Feb. I had blood tests and a scan before Christmas, saw the oncology gynaecologist consultant 2 Jan then again on 29 Jan after my MRI by which time he was quite confident that I didn’t have cancer. My pre op was on 30 Jan, exactly one week before surgery. When I woke up after surgery the surgeon came to see me (I saw her immediately before I went in as well so had the opportunity for more questions). She told me that my uterus had been distended to about a foot across and that the weight of everything removed was over a kilo. My ovaries had been up underneath my rib cage so it was no wonder I’d felt uncomfortable! I saw the consultant at 6 weeks when he confirmed that nothing cancerous had been found, as he had believed once he saw the MRI. Apparently one in twenty women have fibroids and less than 10% of these are found to be cancerous. I think that’s what he said anyway, the % cancer may have been a lot lower. I had a full TAH and BSO because of the size and number of fibroids and the effect this was having on my chest (pain, nausea etc). My age was also a factor as I was 61 at the time of the op. Sorry to go on! Xx

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Oh my goodness, that was huge. You must be feeling so much better now that it’s been removed.

Yes mine has been rather quick also with the extra time I had to wait for my MRI results and the first op being cancelled, although I was a little relieved by that as it would have been my sons 21st the day after that date and my 50th 2weeks after so at least I can get them out of the way before my op now.

Thank you for sharing your experience with me, it’s nice to know I’m not alone.

How are you feeling now?

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I think it helps me as well to hear about other women’s experiences. I am not fully recovered yet, my stamina isn’t back to where it was and I certainly can’t do as much as I could before the op in Pilates! Getting a tiny bit of discomfort on the right of my pelvis which is where the biggest fibroid (and the cysts) were. Probably had adhesions there as well though not confirmed, to be honest I didn’t ask! For the first few months I felt as though my body was too big for my insides but that’s feeling has passed now. Someone on this blog said that it takes 12 months to fully recover and after 6 months I think that is probably about right... the hardest thing for me has been being patient with myself! Please please be kind to yourself after your surgery. xx

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Ouch it is obviously much more than I am expecting. I was told 6-8 weeks. I’m sorry to hear you still have pain :( I hope that passes soon. It’s such a scary thought.

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It’s not so bad really, I went back to work at 6 weeks. Painkillers post op for less than a week. My body just feels different now which I guess is to be expected after major surgery xx

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Oh dear I’m sorry to hear you are feeling so poorly. It’s 16 days now since my operation. Yesterday I took off my compression socks and the day before that gave myself the last injection. I haven’t needed painkillers for well over a week and I am a real wimp when it comes to pain and discomfort.

The main symptom I still have is fatigue, I tire very easily indeed so I am learning to pace myself. Yesterday we went out for a walk and some lunch and I was tired but didn’t need to have a nap when we got home. I am very lucky, my husband is at home with me so I am being looked after really well and don’t need to cook or shop or anything like that.

I was walking around the day after surgery, you’ll be encouraged to do this to get your circulation and digestion working.within a week of the op I was walking around quite normally, just a bit of abdominal discomfort (I had bikini line surgery). The worst thing for me has been the discomfort caused by flatulence! Walking around certainly helps that and the hospital gave me laxatives to help me with constipation but I haven’t taken those for about a week. I’m watching what I eat, prunes help a lot!

I used to wake up every morning with lower back pain and that has gone since my surgery.

One thing I can’t comment on is how you will feel if you have your ovaries removed. I’m 61 and have been through the menopause so my hormone levels haven’t been affected, though I was weepy for a few days before and after surgery. Before the op I was very anxious but all of the medical professionals that I met were wonderful and going into surgery I felt very positive.

Like you I was very concerned about recovery. If the surgery goes well there really is no need to worry. I am following the advice the staff nurse who did my pre op gave me - absolutely no lifting of anything heavier than a kettle with a cup of water in it for 6 weeks. I am being very careful! I try to get out for a walk everyday and if I can’t get out then I walk up and down the hallway at home! I can walk up and down hill and go up and down stairs. I can’t walk a tightrope my normal brisk pace but it’s early days.

And yes, I am UK based so was treated by our wonderful NHS!

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No idea where tightrope came from in my last post. That’s auto fill for you 🤣

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That’s so helpful thank you!

How long did it take for you to get your operation date through?

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I went to my GP with chest pain in mid December and was given a provisional date for surgery as soon as I saw the consultant for the first time in January. My GP had referrred me to an oncologist because back in December he suspected that I had ovarian cancer so I was treated with some urgency. It was 13 weeks from seeing my GP to having surgery. I have just had my biopsy results and these confirm the MRI and what was seen during surgery, all benign thank goodness.

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Scrub the 13 weeks, it wasn’t that long, seem to have lost the ability to count! It was 8 weeks.

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Ladies, I've finally had my eviction date come through for 28th March! Now it all feels so real.

Any advice on what to buy for the hospital and take to the hospital etc?? any advice would be perfect!! :)

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Depends how long you are in for but ear plugs and eye mask so you can sleep, things to do and read, nibbles and drinks, you might get some bleeding so best take some pads with you.

Good luck 🙂

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Peppermint tea - it will help with wind. Staff nurse at my pre op gave me this tip and 6 weeks post op I am still drinking it several times a day. Hope everything goes well for you

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Hi I’m also going threw the same thing I have a very very large fibroid in my womb that sticks out and makes me look 6 months pregnant it’s very painful most of the time and I bleed lots

When I was first diagnosed with a fibroid I had quite a few test done to make sure it wasn’t cancer but thankfully it’s not I was given shrinking tablets to try for 3 months then 6 months but at the end I was rescanned and the fibroid had over doubled in size the tablets I was put on esemya have been recalled as they were found to be dangerous to your liver

3 months after scan and finishing the tablets I’m still no better and the fibroid has grown again so now I have been listed for a hysterectomy but they have explained that it’s to big for keyhole so either a big bikini line cut or vertical cut depending on what they find

I’m 45 not really ready for the change yet so have requested they keep my ovaries in if possible but again they are not sure what condition they are in until they get in there

Hope all goes well with your surgery

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Currently waiting for the removal of multiple fibroids and will be having a myomectomy (bikini line incision). I’ll be having mine in 2 months or if my symptoms are still the same urgently in 1 month due to my inability to eat properly and extreme pain.

I’ve heard the recovery is a bit more intense than a laparoscopic surgery (key hole) but to be honest if it takes away my daily pain, enables me to eat and gives me back the use of my bowels I’m all for it!

My first ever laparoscopic surgery was a dream, I felt I could fly afterwards and go back to work the next day but my resent one was and has been a hard and painful recovery.

Things to take if your staying in hospital; I’m told for a myomectoy it’ll be a few days:

Ear plugs, eye mask - nurses wake you all the time for blood pressure tests and pain relief.

Mint tablets, mint tic tacks, mint tea, mint oil drops - helped me with the gas pains from surgery.

Extra strong strepsils. Lipsil - your throat is really dry when you come out of surgery and your lips too.

Sliders - best form of shoe and shower friendly.

V-pillow - best supporting pillow.

Healthy digestible snacks.

When I was in hospital in March I had all kinds of laxatives to help me go but nothing worked, not even an enigma. Senna tablets don’t work either but Senna pods boiled into a tea and drank the night before works for me but it does give you mild stomach pains. I couldn’t take the pre op solution because this was too harsh.

Just speak to your consultant on what may work best for you.

You might be out of action for minimum of 6weeks, I say minimum because my laparoscopy recovery time was supposed to be 2 week minimum and I took longer.

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Hi Jaz

How did your operation go? Hope all was well and you’ve recovered x

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Hi Mand0609,

My operation could not have gone better. I was a complete mess the morning of, but it was the best decision to get rid of the alien. They had to reconstruct one side of my womb as the Fibroid was attached but they saved all my organs so there were no complications as such. I wont sugar coat it, I could have never of prepared myself for the pain that I was going to experience once the morphine had stopped, and getting up to go to the toilet for the first time was awful. Being at home was a struggle, even flushing the toilet was painful because of the strain on your stomach. But after 2-3 weeks I was able to move around perfect. My scar is so low, and nearly unrecognisable, and I am so so pleased with it.

18 weeks post op, I had a follow up scan (2 weeks ago) which unfortunately was not the best experience. I had to have an internal camera put into my womb, but was the most uncomfortable pain - however was told that my womb had healed, my scar was perfect & I had no other fibroids!

I am so glad the journey is over, but continue to raise awareness with people in my area about fibroids because its so unknown!

Thank you for asking :)xx

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That’s abulous. I’m glad it all went well and they managed to save your organs especially with you being so young. It must be fabulous to be fibroid free now. Good luck with the future and thank you for replying and letting me know how it all went xx

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