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[Desdemona]

Hi, just found this site. I have had severe PMDD for about 25 years, I am 55 now and still having regular periods. I was told I had fibroids about 12 years ago and prescribed Tranexamic acid and Mefenamic acid to help with the blood loss and pain. However, recently the pain has become much worse so was referred to a gynaecologist who decided to do something called an ablation and also a procedure for shaving away part of one of the fibroids that appears to be embedded in the lining of the uterus, he wasn't intending to touch all the others though, that press on my bladder! I went in for the procedure yesterday, sat there for six and a half hours, gowned up and terrified and was then told they didn't have the necessary equipment to do the op!!! Anyway, the surgeon, a woman, said she didn't believe either procedure would help with the pain, only the blood loss, so what is the point?? I think the procedures were called Mysure and Novasure, has anyone else had them done?

[Alaine1 Administrator]

Hi Desdemona,

How frustrating for you! Let’s hope you get rebooked very soon. Have you been given the phone number for the gynae schedulers? They as you know schedule surgeries for the gynae teams so I would ring the gynae clinic or consultant secretary and ask for it or you can ring the switchboard for the hospital. I’ve heard of both of those procedures and have a line of thought as to why you were offered them - the gynaecologist you spoke to might not have had the full clinical picture, been experienced enough to provide a clear reason as to why she thought that and again it could simply be her belief based on training experience. Hang in there I’m just about to have a meeting with my GP practice manager so will respond later on today.

[Desdemona in reply to Alaine1]

Hi Alaine1, hope you got on well with your GP. I have fibromyalgia and ME and after doing some research, I wonder whether its that causing the pain, rather than the fibroids but I just down know. I could have had a hysterectomy (full) but didn't really want that, as it seemed a bit radical as I surely should go through menopause soon.

[Alaine1 Administrator in reply to Desdemona]

Hi again!

Sorry I didn’t reply in the afternoon but I had an appt with practice manager who was trying to pass the buck on a referral which left me upset and annoyed.

I have ME myself so can fully understand the battle! I’m a bit confused over the surgeons comments as the ablation has been shown to be effective for heavy menstrual bleeding although with every medical procedure it doesn’t work for everyone. I’m guessing she feels that the heavy menstrual bleeding is solely due to the fibroids so in her opinion won’t work/doesn’t make sense - treatment of all the fibroids makes more sense especially if they are pressing onyour bladder. I have bladder pain syndrome so I know that anything that presses onto it even an examination causes extreme pain. It maybe that to some extent you have always suffered from HMB prior to the fibroids so the gynae felt that there were two separate issues to be tackled. I’m guessing you have had medical treatment for the HMB before going for the ablation? Did the gynae provide any information on the two different procedures available for the ablation? This is something that should have been discussed with you prior to adding you onto the waiting list but it doesn’t sound as though this hasn’t been provided.

HMB is known to occur with fibroids so unless you have always had HMB prior to fibroids it maybe that the surgeon is right in thinking the ablation isn’t needed and effective treatment of the fibroids is required. A procedure that can be used for fibroids is a myomectomy especially if you don’t want or aren’t a candidate for a hysterectomy (partial or full) your surgeon might have wanted to carry out shaving of the fibroids as they aren’t skilled/trained to undertake myomectomy surgery. I will provide information on myomectomy surgery below so you can have a read. If you decide this is something you would prefer to have carried out you can ask for another appt with your gynae consultant to find out if you are suitable. If they feel that the fibroids are too near your bladder you can always ask for a second opinion to another gynae in the same NHS trust or to another hospital as you are entitled to a second opinion without it compromising your care at your current hospital. You can ask your GP to do this or you can ask your hospital consultant. I’m not sure where you are or what hospital you are seen, but big city based hospitals do see women in your situation all of the time so might be worth investigating. You can see the names of the gynaecologists both at the hospital where you are currently being treated and also at major hospitals in a city online. You can then look these consultants up online to see if they practice privately and from there go to the private hospital pages where they work - they usually provide a pretty comprehensive profile on their skills and training/research. You would need to see if they treat fibroids and if they carry out myomectomies. I know my endometriosis specialist I see carries these out.

So in summary:

Potentially book another appt to see your gynae consultant to discuss if you are suitable for the myomectomy procedure or you can see your GP to discuss this (not sure how good your GP is?)

Look at potential gynaecologists you’d like to be referred to for a second opinion/surgery if you decide that a myomectomy is something you’d like to have carried out. The surgery might be carried out via keyhole (sometimes called minimal invasive surgery) or might have to be open surgery depending on size/position of fibroids. But it may be you aren’t suitable for this procedure and the reason should be explained to you.

Look at their private profiles and narrow down your search until you have 2 possibly 3 gynaecologists you are happy to be referred to for your second opinion.

Once you have done that you can always ask to have a pause placed on your surgery with your current team until you have seen your second opinion team.

When you have your second opinion it might be a case that you have to have any tests repeated or they might write to your current gynaecologist and ask for copies of any scans to be sent over if you go to another NHS trust.

guysandstthomas.nhs.uk/reso...

nbt.nhs.uk/sites/default/fi...

nhs.uk/conditions/fibroids/...

This page describes two other procedures that might also possibly be used to remove your fibroids - so it is worth asking about these. This page also mentions ablation surgery so definitely worth a read!

rcog.org.uk/en/patients/pat...

imperial.nhs.uk/~/media/web...

This is for removal of fibroids. The page below says about carrying out the procedure whilst awake although I think this is predominantly for removal of a polyp so please don’t worry unnecessarily.

bhrhospitals.nhs.uk/downloa...

novasure.com/patients/what-...

This page is useful although I’d always recommend getting additional information as they are effectively recommending their own product!

I hope some of this helps. As always feel free to contact me with any questions. Take care card now and please keep us posted.

[Desdemona in reply to Alaine1]

Hi Alaine1, thank you so much for all that info. I have never heard of HMB. I live in Cornwall, so there is only really one main hospital here Yesterday I was looking at the Myomectomy. I also read about something called GnRHa injections, and something to shrink the fibroids, so there is a lot of choice. I currently see a naturopath and a herbalist and they both believe I should not have any surgery at my age and that they would be able to help. To be honest, the naturopath has been brilliant over the last 8 years, helping with my ME but neither her, nor regular acupuncture has improved the period pain/build up situation. I didn't realise until researching yesterday though, just how much fibromyalgia can lower our hormones and also cause extreme pelvic pain, so that didn't enter my head when discussing the op with the consulant. but then he wont know anything about ME or FM so probably wont be much help. According to the GP my hormones are fine but the naturopath and herbalist both say they are very low, one is 0.01 so I cant see how that can be classed as normal! I have only been having treatment from the herbalist for about 6 weeks, so I cant say yet whether its likely to work, but I guess its worth ago before having myself cut up. I am so sorry you were given the run around at the surgery but you sound very knowledgable which has to be a help when fighting your corner. xx

[Alaine1 Administrator in reply to Desdemona]

With the GnRH injections you can only have them for 6 months maximum. The aim usually is to shrink the fibroids before removing them surgically. I’m on GnRH injections myself for adenomyosis and to help prevent reoccurrence of endometriosis but I’ve failed every medication individually and in various combinations so I’ve been allowed to continue on them long term as it would mean a hysterectomy which both my specialist and myself didn’t want to do due to the fact I was 35 when I started on them and potentially might want children. I was also bleeding heavily for 3 weeks out of every month and in severe pain constantly including passing out etc. I doubt this would be an option for fibroids in your case as you could potentially travel to another hospital for surgery (although I doubt this is an option when feeling unwell anyway) or opt for a hysterectomy which again would be an option based on your age. There was the option of Esyma but recently it’s been restricted due to concerns over affects on the liver.

I’m getting the feeling that you aren’t completely confident with having surgery? I think alternative medicine is ideal to use and I’ve used it myself but I would be sceptical on the hormone reading provided by them and go with the GP results. I used acupuncture which didn’t help my pelvic pain but did help my back pain which was a big help. I do see a dietitian privately who has helped with the pain - I can’t eat dairy or gluten anyway but I found both meat and eggs caused an increase in my pain levels. Mest also was hard to digest. I’m now vegan which has helped my energy a lot although still have ups and downs with my energy but that’s the joy of chronic conditions.

I’m wondering if you need more time to think about the surgery? There is no harm in asking to halt the surgery and see your gynae again to express your concerns especially around the ME. I’ve only ever found that I’ve recovered more slowly from surgeries but I’m doubtful whether it’s completely down to the ME as I found this when I had surgery when I was aged 10. If you didn’t have the surgery you would probably be looking at supportive measures - eating iron rich food to help prevent anaemia, continuing with the naturopath? It’s possible the fibroids would naturally shrink and die once you have entered the menopause so waiting is an option. I’m not sure if you’ve tried the mirena? That is something that works for heavy menstrual bleeding in many women. Have you tried a TENS machine for pain? There is still a lot of things you can try before going to have surgery if you aren’t sure. Please don’t feel pressured into having the surgery unless it’s something you want.

With the ME you’d be very surprised how things have changed. Doctors generally are more clued up on the condition than they were previously. I personally make sure I look after myself more before surgery- getting more rest, keeping away from unwell friends and family, no alcohol etc. It’s not guaranteed but it helps to know I’ve done my best. There are other techniques I use to help manage my pelvic pain and it’s a case of finding a combination you are happy with.

The appt yesterday went well enough and they were more or less forced into admitting they’d not done the referral as told to by one of my specialists. I think they became worried when I was quoting from the NHS constitution and from other sources.

[Desdemona in reply to Alaine1]

Hi Alaine1 no I am not at all confident about surgery. 15 years ago, my PMDD was so bad that I would have had a hysterectomy like a shot but they refused as they felt I wasn't old enough and it would be detrimental in the long run. Since having ME and FM, I have gone down the more natural route and learnt a lot more, so I am not keen on having a hysterectomy as we do actually still need the ovaries after menopause, yes part of them shrinks but then another part kicks in apparently. I have to admit to fear also, I have never had an operation. I think the fact that the two people I have seen, the consultant and the surgeon, gave differing information, has made me rethink. There is no point having an op that isn't going to help with the pain, only the blood loss which is the outcome the surgeon predicted if I went ahead with the Novasure and Mysure procedures. I have a lot of small fibroids but they aren't intending to do anything with them, just the one embedded in the uterus (or it could be a polyp, they don't know). I am wondering if the pain is caused by FM or if the fibroids are degenerating but nobody seems to discuss anything like this, they have given me procedure options but not sufficient explanations - perhaps I am just a coward and looking for a way out!! In Cornwall, we are offered a colonoscopy to check our bowels when we reach 55, so I have that booked for a couple of weeks, I wonder whether that would show anything up to do with the pelvic area/fibroids?

I am on a gluten free diet, also I have been vegetarian for 43 years, I keep a food diary as I find a great number of foods do have an effect on my stomach and my energy levels. I have to confess to cheating sometimes though, if its a food that doesn't appear to 'hurt', not sure if that is right in the long term though.

I am going to compile a list of questionsn to ask the consultant when I see him again later this month. xxxx

[Alaine1 Administrator in reply to Desdemona]

Hi Desdemona,

Ah that makes sense if you’ve not had surgery before. How is your PMDD now?

Having a hysterectomy is such a big and personal decision to make. Some women get a very positive experience and it’s the best decision they’ve ever made whilst others don’t get the full benefit they expected. It’s a case of having realistic expectations from any surgery and then finding other ways to help which you are already doing anyway. Although there are still some other ways you could add in.

I definitely think it’s good that you are making a list of questions to ask the consultant in a few weeks time which hopefully should help you make a decision.

I don’t believe a colonoscopy would show anything unless it’s pressing on the bowel and creating a bulge.

It’s very difficult when you have other illnesses besides suffering from pelvic pain

[Debra13 in reply to Desdemona]

Hello,

I had huge fibroids and a very enlarged uterus. I was bleeding terribly in between periods and the pain and pressure I felt was horrible especially with the Pudendal neuralgia. I had the partial hysterectomy but the doctor left my ovaries and my cervix. I was good for about a year and then at the age of 44 I started with symptoms of menopause. It’s horrible to have this pain now and be in menopause. Even though the other pains are gone. It’s kinda a catch 22. I don’t think I would want all the other stuff back but I truly can do without the hot flashes and the mood swings and the depression. It can be a bit much. Deb😔

[Debra13 in reply to Alaine1]

Alaine. You are a terrific person. Thank you for all that you do for everyone on here. Thank you for allowing the post. I hope that everyone realizes that they need to consult with there doctors before they try any of the treatments that are posted here and to get the advice of there doctors. This was basically an idea, a guide for those who didn’t know where to start or those that nothing was helping. Maybe what didn’t work for one may work for another. That was my point with this. So ladies and gentlemen please get the advice from your Doctors before trying even a vitamin out there. Thanks Debra 13. And thank you Alaine your the best.

[costagran]

when i was going through my menopause i bled profusely and had terrible period type pain for ages.

the gynno said it was my fibroids and put me in the book for a hysterectomy.

by the time my op appointment come through(4 months) i was fine so never actually had my uterus removed.

bare in mind that after you've gone through the menopause your fibroids shrink because of the lack of eostrogen to feed them.

that was all 25 years ago.

for the last 6.5 years i've had pelvic pain .today with all their fancy diagnostic state of the art machines i still cant get a sensible diagnosis.

maybe i'm being an old cynic but i cant help thinking doctors today arent as skilled as they were years ago.

so i say to you be wary of diagnosis and if you can get a second opinion, dont show her the notes of the first opinion as they just copy them laughing all the way to the bank.

[Desdemona in reply to costagran]

Hi, I think one of the problems is that doctors specialise too much, I know that sounds silly but they do need to be able to look at us from other angles as we aren't all the same. I have fibromyalgia but my consultant did not seem able to discuss that, or the fact that my hormone levels are way too low - all of which could be a factor in my pelvic pain - because they were not his fields of expertise!! so, do we have to see half a dozen experts for their individual view on what is essentially the same problem? Mad. My hormone levels are so low that really the fibroids should already be shrinking but they are not. Have you tried an acupuncturist? They are very good with gynae problems?