Needing advice after disappointing gyno appointment

Hi dear, sorry to hear about your issues. First up, you have every right to feel like you need more info before making such a big decision. However, I do have some thoughts which might help you a bit with working through some of your fears, if not your actual concerns.

It would help if I knew your age, how close you are/ how far past menopause you might be, if you have finished having your family, etc, because these things do have significant bearings.

As far as cancer is concerned, if you're afraid of your fibroids containing cancer, I wouldn't worry too much. It is soooo rare, like one in a million type thing. IF your gynae was worried about that, she wouldn't be offering you a lap. She would be telling you to have a hysterectomy as soon as possible. 

As for ovarian cancer, I don't know too much about it, but you'd have every right to request to be tested for it. I think this is done with your usual smear? So ask for one and go ahead. I think a nurse can do it.

Anyway, if it is your fibroids causing you trouble, you can also ask about hormone therapy to try to shrink them. I'm on Zoladex, which has some nasty menopausal side-effects (but is working well for me), but Esmya is also becoming more widely used. Also, IF your fibroids don't shrink using them, that can help indicate if there is something more serious going on. (But again, I want to reiterate it is beyond rare.)

Why don't you ask to try one of the hormone treatments for a few months before making a decision on surgery?

There are also other alternatives like embolization, but it depends if you're wanting to keep your fertility.

Well, hope this helps you some. I know quite a bit about the cancer side of things because for a while I had a suspected case and was sent to an onchologist. It turned out to be a false alarm But if you have more questions, feel free to ask.

Anyway, best wishes

Rosie

 

This sounds like a nightmare. You don't state your age. I have researched Ovarian Cancer causes and according to cancer sites. Ovarian cancer can occur in women over 55 who have completed the menopause or women with a heredity cancer risk. If you don't fall into any of these groups then you put that worry out of your mind.

With regards to the Fibroid can't believe what I am reading about your Gynocolgist and the way she treated you. It's hard enough without that. Other than that I would say do lots of research online and don't be pushed into anything hasty.

I have tried other things cos I was keen to aviod a Hysterectomy I had UAE but you do what's best for you x

Hi Betty, I am sorry to hear you feel  bad after your appointment and I can totally understand. They can be unpleasant especially if the doctor does not have much of a bedside manner. Sometimes I find they can be too focussed on ticking their own boxes like that they have examined you etc. There are ocassions where an internal will not make any difference to the outcome, and scans are needed to determine things so I am afraid I have said no on ocassion especially if I know I am going to need to go on and say have an MRI or ultrasound that can see inside and you wont have to be prodded internally as some of us find it uncomfortable especially if fibroids are painful. My GP advised me to always ask what the purpose is of what they are saying to do, and of course we can say no, it is our body.  I would think an MRI would be better for you to rule out if you have anything more serious than a fibroid or if an ultra sound ( 1st scan) cannot determine if your fibroid is a fibroid or is something more serious.   Think long and hard about having an operation as rosie says below there is the esmya now which can help to shrink them ( not so good on subserosal ones though is one opinion but that can be discussed with the Gynae, it depends if you can live with the fibroids until menopause when they are likely to shrink themselves. The op will take out the fibroids if you really have bad symptoms that cannot be managed any other way but is there any reason to think it is cancer ?  A scan should be rule that out I would expect. That is what I did when I had the same worry as I also worried about ovarian cancer due to a slightly raised CA125. Fibroids can increase your CA125 levels..I would recommend a scan initially before an operation but of course it is your choice and you would have to request this scan which of course is essential to confirm your diagnosis.  It can be confusing, I agree but it gets easier with time.  Good luck   

Hi listen to your body and trust your instinct. I've learnt this the hard way over the past year both with my and my husbands health.

I had a similar battle with several gynaecologists (usual story different doctor at every appointment). I was diagnosed with fibroids back in 2008 in Scotland but they weren't really causing any problems - I had 2 miscarriages but as my fibroids were outside the uterus they didn't think they were to blame. They decided as I didn't have any major problems apart from heavy periods and I'd split my partner so children wasn't an issue to monitor them for 12 months. They didn't grow so I agreed to have regular scans and go back if I had any other symptoms.

2 years later I began to have more painful periods and anaemia due to blood loss. I'd also moved to Dorset so went to a GP for a referral to gynaecologist. 2 dismissed my problems and kept testing for STIs despite my GP having done this originally. They put me on the mini pill but bleeding got worse so it was stopped again and I was told if symptoms got worse go back to GP.

During this time I got married and changed GP. He refered me back to the gynaecologist following another miscarriage. As this was my third a whole host of tests were done and it did show some blood clotting problems which might be the problem but they weren't sure due to the pain and bloating. The gynaecologist I saw this time arranged scans but was adamant that I had endometriosis and needed laprascopy . When I asked about fibroids he said I didn't have any and even wrote to my doctor to say I was emotionally unstable as I dared to get upset when he told me I was stupid for worrying about taking time off work as I get statutory sick pay (I'm self employed so didn't want to take time off during my busiest 2 months). My GP agreed that the consultant had been unprofessional and arranged for me to be seen at another hospital. He also admitted that they had no medical records for me from Scotland (still missing almost 5 years after they were requested). My new consultant didn't do a scan and said laprascopy was my only option so last March had it done. I was told all they found was one golf ball sized fibroid but it was on a stalk outside my uterus so moving around. She recommended it be removed but another surgeon would need to do. Whilst all this was going on my stomach began to bulge out with many people thinking I was pregnant and I began to get pain during sex.

Fast forward to January this year and after several delays due to vary reasons I was finally in the hospital for the fibroid to be removed. I saw the surgeon for the first time that morning and was very nervous about the surgery. She asked if I was sure that I wanted to go ahead as it was such a small fibroid and not worth the 6 week recovery. I actually thought she wasn't going to operate. I had the operation under sedation with spinal anaesthetic and they lowered the sedation in the middle of the surgery to say they found another fibroid again outside the uterus. Turns out it weighed over a kilo and yes the first fibroid did look insignificant compared to it when I was shown them afterwards. The surgeon admitted later that day that it did explain more of my symptoms.

I'm now 4 weeks post op. It hasn't been an easy recovery but the funny bulge in my stomach has gone, I've lost 1.5kg and I don't feel the pressure and fullness I felt. I definitely feel that it was worth the surgery and pain and I'm really looking forward to seeing how they explain the fact that they missed such a large fibroid previously.

Sorry this is such a long reply but I wanted to show how much you have to trust your own instincts and listen to your body. I had a 4 and half year fight to get to this stage which has caused my husband and me to put off doing things and trying again for a baby. The pain meds I took for years have also caused me permanent damage to my stomach. I have a good GP who also talked me through options and answered questions where he could. Maybe you could speak to your GP and ask about how you would treat ibs or what you could do to see if it is ibs while you wait for the surgery?

Thanks to everyone for your helpful replies.

I'm only 37 and haven't had a family. I'd like to but my symptoms make it impossible. I would however sacrifice my fertility if it meant I would feel better.

The consultant did mention something about hormone medication that could "remove the gynaecology factors" I didn't know what she meant by this but she focused more of the operation.

The talk of ovarian cancer has been from my gp who originally sent me for ultrasound. I think it was because I had fatigue, rashes and bloating. She told me I had elevated ca125 and this would need to be the done in a month and if it had gone up, I'd be referred urgently to gynaecology. My levels did go up but I was then told I was too young to be at risk of ovarian cancer so was put back to routine referral. This was 2 months of me trying to not freak out. Now that I know I do have symptoms of ovarian cancer and that fibroids don't seem to eclampsia my fatigue as I have light periods, I do want to rule it out but don't know if the laporoscopy would do that? I'm guessing it would.

I really don't feel very well informed. I have choose to have an operation and I don't even know why. She said it would role or endometriosis but I don't even have symptoms of that.

With IBS. I just don't buy it. 8used to have it when I was younger and had a terrible diet and unhealthy lifestyle. When this started I war in the best shape of my life, mediated daily and had a really nutritious diet. My symptoms don't seem to react to stress.

I just hate the idea that what I'm being offered is to ease my mind. Like I'm just being overly anxious. The thing is, I feel I've been totally led down this gynae path by all the doctors I've seen. I was trying to treat my symptoms through nutrition, mindfulness and homeopathic ways but then dinnertime mentioned the c word so I thought I need to take the medics seriously. Now is months down the line and I just feel so lost.

Hi BettyBetter, sorry that this appointment has left you unsure, I am not surprised. As others have said, you don't say what your age is and where you are with regards menopause.  This will have a bearing on treatment for the fibroid, if that is what you want.

Did you have an ultrasound that diagnosed the fibroids in December? Did your fatigue and abdominal pain take you to the Drs in the first instance? I would agree that surgery as an option to 'ease your mind' seems a bit of a strange choice to be given.  Do you think this was offered because you are worried about cancer? or because of symptoms?  I can see why you are confused

I have fibroids which were discovered when I went for an ultrasound in December, I did not have a CA125 test, but know that fibroids raise this. I went because I am perimenopausal and had periods every two weeks at that time and they were just checking things out. They could not see my ovaries on the scan and told me I had multiple fibroids (too many to count) and put their hand on my shoulder, to say I was worried would be an understatement.

I have been fatigued and had stomach issues on and off and just not right. I had my appointment with the gynaecologist a few weeks ago who said similar to yours but sounds as if he was clearer.  The fibroids are not causing the bleeding, there is only one large one and the smaller ones are OK too - without symptoms he would not recommend surgery. Symptoms would be constant or near constant back pain, urinary frequence or bowel issues, stomach pain is not usually a sign of pressure symtoms from a fibroid.  The other symptom  is very heavy bleeding.

So, I think you could feel confident your issues are not fibroid related - saying that, I have had a return of occassional IBS symptoms in the last year and that may or may not be the fibroid or my hormones changing.  Your fibroids could have been there for a long time and therefore not a problem to leave them.

Your fear about cancer, I agree that if you haven't had an ultrasound, maybe you can ask for one, I also think symptoms would be more persistant and more of them if you had an issue.  I would suggest you go back to your GP and explain that you haven't had a satisfactory explanation for the pain you are experiencing and could they explain - they should get a report from your consultation.  I wouldn't rush into surgery, perhaps you can sort these issues with a bit more time.

Hi Betty, if your main concern is to rule out ovarian cancer ask for an MRI first , that is the only other way other than surgery. I know it is not a 100 % but perhaps 90% it is the next best thing before having surgery. That is how I ruled out I didnt have ovarian cancer. 

Surgery has risks and you have to know all about them when you make your decision about that. You would want to know what is the benefits of the surgery is , is it to improve your fertility for example?  If it just to rule out cancer then there are other ways before surgery.  Good luck 

Yes, I agree you should try asking for an MRI - however these are very expensive so I'm not sure what your chances are of getting one on NHS, as they'll do everything they can to aviod giving you one. I would just pester and demand until they give in?

Here's what I would do. Book another gynae appointment, possibly with a different doctor. Write down ALL your concerns and make sure you get a clear answer for each one. Ask about hormone treatment options. Ask why you're being offered laparoscopy before any other treatment is tried. Ask why you haven't been referred for an MRI, and if they don't give you a good answer, demand to have one.

After all is said and done, a laparoscopy might be okay, because I believe it is much less invasive than a laparotomy (myomectomy) and could sort your problems, if they do turn out to be fibroid related. But I would certainly look into esmya or zoladex first, and plump for an MRI if you can get it.

Thank you to everyone for replying. I've taken a few days to get my head round everything and the comments here had really helped me to figure out what it is I'm thinking. 

I originally went to my GP in Dec to ask for some tests to rule out a few infections. I had been strugling with fatigue for quite some time and it was getting worse along with extreme bloating (which was accompanied with pelvic and back pain) and some sporadic rashes on my chest, abdomen and face. I had been to the GP about it a year earlier due to all this, saw a gastro consultant, tested negative for coeliacs and was told it was probably IBS. Since then, I'd been dealing with it my own way- mainly focusing on diet and lifestyle (although I was extremely healthy beforehand). I was working with a nutritionist and as I was not responding to this healing diet, she suggested I get tested for a few infections (like heliobactor plyori) when I was at the GP asking for this test, she asked to examine my abdomen and then send me for an ultra sound and the CA125 test. She didn't tell me this at the time but I'm guessing she was wanting to rule out ovarian cancer. After the ultrasound and the test, I was told my CA125 levels were elevated and I needed to wait a month and redo the test and if it was still high, I'd be sent off urgently to gynae. But then when that test did come back and was higher, I was told that the gynae consultant downgraded the urgent referral due to my age. Then when I see the gynae, she dismisses everything and said my symptoms don't seem gynae related. I think if she had been better with me and explained things more and if I'd felt more able to challenge her, then I'd maybe be reassured but I just feel she dismissed me as someone who's presetered to be seen (which isn't the case). So I think I'll go for the laporoscopy just so I know someone's actually looked in there and it's all as it should be. 

I don't think that my fobroids are cancerous. I think my biggest worry is that I have ovarian cancer (mainly because a few GPs obviously thought there was a risk of this), I know it's less likely at my age (37) but I also know it's not impossible and I do have several of the symptoms. I have had an ultrasound but they couldn't really see my right ovary properly and I'm worried they've missed something and I've read that earlier stages don't always show on ultrasound. I think it's just because of my fatigue, I've not been offered an explanation as to why I've had such extreme fatigue for so long. 

I think what really upsets me is that I feel the doctors are (again) using IBS as a way to explain away my symptoms but it doesn't explain everything. I don't even really have gastro problems!! They seem to just focus on symptoms that suit their diagosis and ignore the ones that don't- even if they are the main problem. 

I've made an appointment with the original referring GP next week to try get some answers. I do like this GP so hopefully she'll be able to reassure me and help me understand what's happened.