Large Fibroid! advice for surgery please! :(

Posted , 12 users are following.

Hi, I'm 26 years old and currently have no children, I noticed that the lower part of my stomach, closer to my bikini line was rock hard at the end of June, however I just put this down to a period at the time. However, as the months have gone on, i've noticed a large lump appearing, especially when I lay down. I feel stretched, full all of the time, severe back pain, and severe pain when on my period. When I stand I look 20+ weeks pregnant and felt so tired. I had a doctors appointment, where they thought for 2 weeks I was pregnant, after me explaining that there was no way I could be, I was finally referred for an ultra sound at the end of October 2017. This was when I finally got answers. Following the Ultra sound, they located a 15cm fibroid growing on the edge of my womb. she was unable to locate my ovaries and bladder so was close to having an internal, however because of the size of my fibroid, it had pushed all of my organs around, which meant my ovaries were up under my boobs, and my bladder was around the side of the body, which is when I was referred to the Gyno.

A month later, I finally got to meet the Gyno, who explained a number of options, however only one was available for me because of the size of my fibroid. She explained that I could take medication to shrink it, however this would only shrink it by a few cms, meaning I would still have the lump and same symptoms, there was another option of travelling to London to have needles put into my groin area to cut the blood circulation off from my fibroid and hope that it bled out and removed this however the size meant this option wasn't available. Key hole was off the list, which left me with the open Myomectomy procedure (incision on the bikini line). I have been told that my surgery will be in 2 months time (February) and I am now panicking. My Gyno told me that I would need to sign a consent form before my surgery, so that if there has been any damage and they need to do a hysterectomy then they can without waking me from surgery and putting me back under. I am only 26 with no children so really don't want this to be done and they have said if I fall pregnant after this procedure, I will not be able to give birth naturally. Has anyone gone under for the standard myomectomy, and come back around having to have a hysterectomy?

I just want some advice on the operation, as I am panicking.

How long is recovery, how long are you in hospital for, does your stomach go back to normal size along with your weight (I have put on nearly half a stone since the fibroid). I am over the moon that this isn't an unknown thing and that many people have gone through what I am about to, however it is still pretty scary so just wanted some of your experiences, good or bad that can prepare me and anything that I need to buy/get before surgery for my recovery smile

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  • Posted

    There is a lady on here called  I Patricia I'm sure she's having a myomectomy but didn't want to consent to hysterectomy, find her & ask. She has a profile pic. All I would say is its my understanding they only take it all if its critical. As there's usually more blood loss with myomectomy than hysterectomy. I was pregnant with my son with a large fibroid. Hope this helps

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  • Posted

    Hey jazmin

    I am sorry to hear your news and considering your only 26 it's sad. But i hope whatever you choose will be ok. Am 8wks post op mymectomy bikini line cut but my experience was good am mot gonna lie so sometimes it depends with the surgeon. From what I remember in our discussion he mentioned about blood loss before surgery but it went well without losing too much blood. The only thing is after the surgery that u have to deal with pain but it get better in time. Healing process takes about 6wks but u start feeling better before that. My stomach has gone flat after removing 5fibroids and I feel great. Good luck and don't be scared everything will be fine

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    • Posted

      Hi Mary19501,

      Thank you for replying.

      Its nice to know that you're in recovery after a severe operation that im due to have. I think im more scared about the pain after surgery rather than the precautions to my operation. Although im still young(ish) I haven't ever wanted children, and haven't really ever thought about having them either. I have the best group of friends who all have children who I spoil like my own, so its not so much the hysterectomy that is scaring me, its just the recovery. I am hoping my stomach goes back to normal afterwards, as normally its flat, but at the moment, its the size of a 20 week pregnancy.

      Did you find out how big your fibroids were that they removed? and did you get to see them afterwards?

      xx

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    • Posted

      Mary19501, sorry I forgot to ask - I have heard that the incision can be either across your bikini line or going up towards your belly button.

      Was you given the choice, or did your surgeon mention anything prior to surgery about the way they would be cutting you?

      I really do not want the scar going up to belly button, which is another thing im scared of. sad

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    • Posted

      Hi jazz,

      My incision is bikin line and I was not given the choice. May be depends on how big the fibroids are. My biggest fibroid was 7cm and the rest were 5 and 4. He took out 6. Good luck hun

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  • Posted

    I totally understand your what you are going through especially the weight gain.. I'm having my Hysteroscopic myomectomy in January. As far as I know I will not have to be cut .. so I'm nervouseven though it is less invasion than your procedure.. I hope everything goes well for you.. I also hope I'm having the right procedure for my condition. The way I found out I had fibroids is I was having heavy periods, also my blood count dropped really low. I was never told how big they are just know I couldn't get an IUD inserted because of the fibroids blocking the insertion.

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  • Posted

    I really feel for you. I had a similar problem but had already had a family so it wasn't so crucial. However, I still didn't want a hysterectomy and the NHS surgeon could not assure me that she would be able to remove the fibroid via open myomectomy. She said she would try but due to the size of the fibroid (my uterus was size of 28 weeks pregnancy) she could not be sure that during the op she might have to resort to hysterectomy. I wasn't happy with that so I did a lot of research about leading private surgeons in the UK and eventually I had it removed by keyhole surgery. It can be done but it needs a very skilled surgeon and it takes longer than traditional surgery which is why the NHS don't usually do it. Yes, it cost a lot, but you're so young that if there's any way you could raise the money, my advice would be to go to one of the top surgeons and pay privately. I have not had any further problems since the surgery 4 years ago.

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  • Posted

    Or find a good nhs keyhole surgeon, with robot & suite x

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  • Posted

    By the way, where are you based?
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  • Posted

    Hey Jazmin42797,

    I'm sorry to hear about what your having to go through. However I can totally relate. I've been battling with my fibroids for about 5 years now. So I've finally decided to opt for open myomectomy, my surgeon doesn't want to do keyhole, as he prefers to physically  see what he's working with (according to him 😊wink. I'll be having the surgery in a few days. I'm just as worried 😩 as you are about the possibility of the surgery being converted to hysterectomy; however I have been informed that this is rare. Nonetheless I've just had enough of constantly feeling severely bloated, forever constipated and urine frequency. Also I  am now 34 and I really want to give my self the best possible chance to conceive when I start trying. Don't be afraid, just do your research about your surgeon and ensure that they have a significant amount of experience in this procedure. I understand your anxiety though, even I feel anxious when I think about my upcoming surgery. However I have seriously thought about it for a few months now and decided that fibroids are not something that I have to live with; so they should be removed. I wish you all the best in your journey. I'm happy to post about how things go following my surgery as soon as I feel well enough to type.

    Take care. x

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    • Posted

      Hi Kay La-Funk,

      Thank you for your responding, means a lot! It does make me feel better knowing I am not alone with this. I had never heard of fibroids before being diagnosed with one. None of my family had even heard of them so im so thankful for your replies.

      I've only had my fibroid, or at least only noticed it for 6 months, so I dread to think what you have been through to have yours for 5 years. I get good and bad days with my pain, sometimes its so severe I cant get comfortable or sit for long periods of time, others im fine. I just don't want to have to guess how my day is going to plan out because of the fibroid pain anymore.

      I hope that your surgery is successful and goes well and you have a speedy recovery. Would you mind updating me on how you feel after your surgery and your recovery progress please?

      Good Luck x

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  • Posted

    Hi Jazmin, I agree with Deanne, with NHS they will not operate you without mentioning the hysterectomy. If you can do go private, otherwise find a doctor that has lots of experience in large fibroids removal. 
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  • Posted

    I'm not sure why people recommend going private? NHS have excellent specialists. In fact many private surgeons work on the NHS. I went to see a Harley Street surgeon & he hadn't even been bothered to look at my MR, even though I'd travelled 700 miles & had made sure with his secretary before I went that he had the images. I had to be invaded & have an internal when I got there, but he hadn't looked at the scan! There would have been no need for an internal if he'd looked at the scan! He arranged the procedure, I had a pre op & everything only for it to be cancelled a few weeks later after he'd actually looked at the scan! So I cannot fully advocate private after that experience & he was on the top 10 fibroid list! Problem with private surgeon's is they have a financial gain, whereas NHS don't. So then how do you really know you've found an excellent private surgeon, its a tough one, as no doubt it'll be a nicer room & feel like nicer care, but is it better & do they have the cutting edge machinery the nhs have. Best thing research your specialists & find the right one, if you aren't happy, move to the next one. Just for the record, my specialist has said I can have keyhole with a 13cm fibroid, on the nhs, if I want to, even though mine isn't cancer, (that they know of) he's a cancer specialist, so they are used with doing keyhole for large tumours, however he has said, he thinks even though he can & would do it if I wanted that he will refer me to a specialist suite where they have better machinery & even better specialists. I couldn't have asked for a more caring nhs specialist, who has promised me he will over see it all (as there's loads of other complications in my not so wonderful body!) & even though I'm scared & there's loads that could go wrong. All you can do is research & then make the best decision. I can totally get what the other lady said about open you can see what you are doing. (an employee's wife had keyhole 7 they didn't get it all) so she ended up with 2 operations! But with a large fibroid it's usually open myo or hysterectomy, but it can be done keyhole with the right circumstances & surgeon.

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    • Posted

      Hello,

      I totally agree with heather34376!

      NHS is actually very good and it's true that most consultants that provide private treatment also work in the NHS and they're normally highly experienced. My understanding is that the procedure carries the same risk whether it's done via open or laparoscopic; however laparoscopic has less incision and apparently less scarring. I feel we should have faith in the service that NHS provides. It's not always great, however most of the time it is pretty good. Also you wouldn't get better treatment with the procedure whether it's done via NHS or Private. The initial consultation and after care may/ or should  be better with private. However the bottom line is that whether myomectomy is done under private or under NHS, the risks remain the same! Just pick a gynaecologist that you feel comfortable with and consider the length of time they have been operating on  fibroids  e.g. 10 years versus 25 years (the years of experience really do count with surgeons).

      All the best!! x

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