Pelvic Pain Support Network
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Worried Re Fibroid

Hi all,

I’m new to this board so not sure what can be discussed etc. I’m quite anxious at the moment as on the first bank holiday Monday in may, I started to experience some stomach pains, in the car on my way back from a lil break, I do have a number of chronic illnesses one being gastroparesis which means my stomach doesn’t work and I have a tube inside my stomach and Jej and am also fed via a broviac line inside my chest and sitting just at the tip of the heart. Anyway, I put the pain down to my tube inside my stomach as I have had numerous abscesses and thought one was starting again. As days went on I was still in a lot of pain so I went to my gp surgery on the fri and she was concerned and sent me straight to my local hospitals, surigical assessment clinic. Still thinking it was my tube the surgeon said he couldn’t see anything but he’d book for me to have an ultrasound scan on the Monday and to come back and see him straight afterwards. This happened on the Monday, which was a wk since and in this appt I was told that the pain was obviously coming from a ‘huge’, his words, fibroid measuring 10cm in my uterus. I didn’t know anything about fibroids so asked what did this’s mean? He said did I want the truth and went all serious, my heart sank, I said yes he said it’s big very big and you will need an operation now, he said it will mean losing your uterus! I felt sick, I burst out crying saying but I have no children, I want children! He told me that he would be doing an urgent referral to the gynaecologists and I would see them and see what they say. I had a phone all fri to say my appt will be this fri and as you can imagine I’m worried and anxious and do not know what to expect, having been told this. Has anyone also been through this themselves and what am I to expect? I don’t mind surgery to remove, well I do if you get me, but if it means getting rid of this fibroid, but I desperately do not want to lose my uterus as you can understand as I am desperate to have children and have not yet got any.

many thanks

S x

19 Replies
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Hi,

Welcome to the message board! I’m sorry to hear you have had a shock about the fibroid which is large. I would wait until you are seen by the gynae team as they are the experts- surgical teams are just that they are specialists in surgery so tend to see things in those terms. The gynae might decide to remove the fibroid but try and save your uterus by performing a myomectomy. It’s an option but I’m guessing they might want to shrink the fibroid first especially as you have a number of conditions which might need further information from your other consultantsto make sure you are safe to proceed for surgery. The other option would be to use a medication to shrink the fibroid such as zoladex given for 3-6 months (please don’t read or listen to the horror stories out there on zoladex or Lupron). I’m on long term zoladex for adenomyosis and to suppress endometriosis from reoccurring and have done extremely well on it. You might get hot flushes, muscle pain but this usually wears off but you can be given livial to help. I’m on livial for my bones and it’s great for hot flushes if you get them. If your fibroid then shrinks to a small size they might still do a myomectomy or decide to leave it. One thing I would suggest you mention is that you want children as this will determine the treatment you are given but ask for the pros and cons of each. Which hospital are you under? I’ve included a range of information on fibroids and myomectomy but each hospital will have its own policy on when to perform myomectomies and if they are performed abdominally or laproscopically (keyhole). Most surgeons now use keyhole as it has faster healing times but due to your gastropresis (my sister had this) and abscesses they might want to perform open surgery with a team of other surgeons. This will all be decided when you meet your gynaecologist but it’s important you are aware of possibilities. I hope some of this information helps. Please feel free to ask questions and post as often as you need 😊

nbt.nhs.uk/our-services/a-z...

* The Brighton hospital patient information sheet is very good as it describes both laparoscopic and open surgery plus care after you operation

bsuh.nhs.uk/wp-content/uplo...

britishfibroidtrust.org.uk/...

royalberkshire.nhs.uk/patie...

Let me know if you need any further information and I will do my best. Let us know how you get on

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Hi Alaina, Thank you so much for your message I really appreciate it and also the links were very helpful. I’m at my appt tomoz so getting nervous but at least I’ll know more then. I’ve read about the Myomectomy and was hoping that they’ll go for that option rather then a hysterectomy. Im happy that the medication has helped you to manage your endometriosis, did you use this for a large fibroid too? I’m just concerned re medication but sure I’ll know more tomorrow as I can’t take tabs due to my gastroparesis they have to go through my feeding tube or inject as I do not absorb. Aw how is your sister doing with her gastroparesis? Thank you so much for all your help and kindness and will let you know how I go on tomorrow, thanks xxx

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Sorry my hospital is Bolton

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That’s ok always happy to help! I’m on it for adenomyosis and endometriosis and very heavy bleeding that lasted 3 weeks out of 4, fortunately I don’t have fibroids on top. Also don’t be afraid to ask for treatments so if you want a myomectomy ask for one but be prepared to take medication to shrink the fibroid first. They might want to try other treatments first especially if you have other chronic health conditions. Taking medication will potentially be a problem if use can’t take tablets so I’m guessing zoladex implant or synarel which is a nasal spray and works in a similar way are still both options

Unfortunately my sister died waiting for a kidney transplant- she was a type 1 diabetic and had been in and out for years with ketoacidosis which was put down to not controlling her blood sugar. It was only when she was referred to a London hospital for her kidney transplant that they discovered the gastroparesis but it was obviously too late. She used to go to the hospital in London for her dialysis ( it is thought at our local hospital which I avoid completely as it’s dreadful )

I hope your appt goes well tomorrow, let us know who it goes 😊

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I was reading a reply you made to shbowker and I have a simpler problem as I have 5 fibroids ranging from 4-5 cms, I was put on esmya in December for 3 months, I was suppose to stop them for 2 months before going back on them for another 3 month cycle, however as I finished my first cycle I was told they were discontinuing them due to some problems some women had. I have since tried to contact my doctor in Cambridge to find out what happens now as they are still there and still big. Me and my partner wants children after we lost ours due to a miscarriage were we found out I had fibroids. But we are not getting any answers from anyone and no other choices to shrink them have been given. I noticed on your reply to shbwker, you mentioned zoladex or lupron, I've never heard of them, I have an appointment in a few weeks and would like to go to them saying I want to try them if I can't go back on esmya. Could please tell me more about them and if they are definitely available in the UK. Thank you.

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Hi Carla,

I’m zoladex and am in the U.K. but I take mine for endometriosis and adenomyosis. Lupron is available in the U.K. Not all hospitals use zoladex some use prostap which is a very similar medication and there are others. Zoladex is only available to use for 6 months especially with fibroids, I’ve been given special permission to stay on zoladex long term as nothing stops my periods and hysterectomy was the only option left - there is usually one treatment that works for most people but both the pain and bleeding were out of control. Fibroids are once they have shrunk are removed via surgery so staying on zoladex wouldn’t be an option especially as there are a lot of long term problems that can occur. I am very well looked after at the hospital in London and have had all of my treatments carried out in the specialists clinic. I’m also looked after by rheumatology and have regular DEXA scans. There is no guarantee you will be allowed zoladex if the doctor believes the risks outweighs the benefit, there is no harm asking though

There is no chance of Esyma being prescribed at the moment due to liver problems arising in some of those taking it. If after investigation the risks are extremely small or were down to another risk then the medication might get prescribed again.

I hope this helps, let us know how you get on after your consultation.

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Thank you for your reply, I'm going to see my g.p and my specialist soon so we really going to ask about zoladex to help with shrinking the fibroids before they do any major surgery, I'm hoping we can get them small enough to do embolization or even high frequency ultrasound surgery both of which are very minor surgeries so I can keep my uterus. We really want to try for a baby after losing ours two years ago. I've never been told about zoladex so hopefully now me and my partner have read up on it hopefully we can get our doctors to agree too. Thank you for your advice hopefully in the next few weeks we lost get something done that sorts our needs and I ll let you know how it goes. thanks.

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Having a non-functioning gut and gynaecological problems might be a sign of an underactive thyroid.

This link is to a case history of a woman who had a large ovarian cyst. It was discovered that she had hypothyroidism. When her hypothyroidism was treated her cyst disappeared.

edmcasereports.com/articles...

I know cysts and fibroids aren't the same thing, but I thought it might be of interest.

There is also a link between uterine fibroids and thyroid nodules :

ncbi.nlm.nih.gov/pubmed/204...

It would be worth asking your doctor(s) to test your thyroid. Once you've been tested ask for copies of the results and the reference ranges and ask for feedback on the results from this HU community :

healthunlocked.com/thyroiduk

For a full thyroid test you would need to get TSH, Free T4 and Free T3 tested, plus thyroid antibodies - TPO and Tg. I don't know where you live but if you live in the UK you might find it hard to get all the proper tests done. But if you don't ask you won't get.

Good luck.

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Thank you so much for your reply and thinks humanbean. I’m sorry I should have mentioned that I do also suffer from Hashimoto’s disease which is an autoimmune underactive thyroid disease. I have already, back in 2010, had a nodule removed and half of my thyroid. This was going to be cancerous containing a papillary carcinoma, but luckily it was only small and contained with the gland so no further treatment was required. I’m still monitored each year and will be for the ten years due to further nodules, but fingers crossed these have remained the same size so far. I wasn’t aware that all this can be related, thank you. Have you yourself experienced this? X

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Sorry yes I’m in the uk, unfortunately like you say my thyroid bloods aren’t monitored enough xxx

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Did you know that you can pay for blood tests without involving a doctor? Lots of people on the Thyroid UK community I linked above pay for their own testing - including me. It's amazing how many people are suffering severe nutrient deficiencies and are under-medicated for thyroid issues. But doctors often think thyroid problems are trivial and don't believe patients (who are mostly women) when they say they feel awful.

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I should have mentioned... Yes, I had lots of gynaecological problems back in the dim and distant past. I was also told I had a borderline underactive thyroid in the early 90s. It took me 20+ years to get treated for my thyroid problems.

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I had a 15x15x14cm fibroid removed from my uterus in January. I too was first told due to the size and position of the fibroid I would have to have a hysterectomy. I’m 30 without any children and insisted this was not an option for me. I was referred to a fertility surgeon who agreed to perform an open myomectomy. 4 months on I’m happy and healthy. Fibroids are not automatic hysterectomies anymore. Ask for a second opinion if you are not happy. Hope this helps and good luck for your appointment tomorrow xx

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Hi I hope everything is going well for you. I too am in the same situation, I have 5 fibroids all in the wrong places according to my doctors at the hospital they were 5cm big with one by the cervix which makes doing a simple smear test very difficult. Like u I want to keep my uterus as me and my partner have been trying for a baby ever since we lost ours two years ago due to a miscarriage that may of been caused by the fibroids I didn't know I had. Since then we were told to keep trying and not to worry about the fibroids, but after a year of trying with no success, I started to feel the fibroids growing as I had a large lump on my stomach, I contacted the hospital myself and saw a doctor at the hospital and explained I want something done but I want the chance to have a baby, he put me on esmya to help shrink the fibroids before any surgery. I was put on them for 3 months, I was suppose to stop them for two months before going back on them unfortunately just as I finished my first 3 months cycle I was told they were stopping the tablets due to problems found with some women taking them. I didn't have any problems with them and with in one month of taking them the lump went down but now I can't take them due to them discontinuing them I can feel them coming back up, I recently had a scan down and found the esmya did work as they shrunk 1cm each. But I haven't had any doctor tell me what the next plan is to try and shrink them more before surgery. I've visited a fertility doctor and she didn't seem that worried and she didn't explain what they would do now, I've been left to worry again and now I can feel them growing again I'm back to worrying they will get to big and will end up removing my uterus. We really want children as we lost our last try, and we don't have any children. I hope things go really well for I have my fingers crossed for my self and will keep them crossed for you.

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Hi all sorry for the delay in my response! So I went to my urgent appt and saw a speciality dr, as my surgeon I had been placed under, was on annual leave. She explained options of maybe tabs first to s

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Oops sorry, to shrink and then to operate! But phew, she said I wouldn’t lose my uterus, to my relief! She said she’d have to discuss this all with my surgeon tho. I hadn’t heard anything then I had to ring the Sec and

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Was told that my surgeon was now on sick and is off a month and could be longer! I’ve been given an appt for 27th July but have to ring before in case he’s not back! As you prob agree I’m not happy as the tabs could be

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Started and now I have to wait. I’ve been told that it’s already large and I’m in lots of pain. Does anyone else experience severe pain? I was told that they don’t cause pain, but then my gp said they do!xxx

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I’m so sorry my reply message is all in sections. For some reason that’s how my iPad would only allow me to type! I’m now on my phone app so should be able to type better. Sorry xxx

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