Finally Getting Somewhere

[KM1986]

Hello ladies - hope you're all on a good day. First of all, please forgive the length of this post - I thought it might help to give all the info.

I've always had horrendous period pain. I've fainted, been sick, you name it. However, the last few years, I've developed additional symptoms to the pain - painful sex, blood clots, constipation, rectal pain, pelvic pain, leg pain, back pain and nausea are amongst the most common.

Back in September I was rushed to A&E with suspected appendicitis. Eventually, they ruled it out but suspected it was possibly a cyst that had ruptured - my white blood cell count was high. After an ultrasound scan revealed no cysts, they sent me home with anti-biotics and pain killers.

A month later I was back in with severe abdominal pain. After numerous other scans which all came back clear, the surgeons were stumped. They did however, find inflammation and fluid on my right ovary. I then seen a gynecologist who diagnosed me with PCOS but said they shouldn't cause any problems - even though there were several visible cysts.

Anyway, long story short I've seen 2 GPs and 1 surgeon who all believe I have endometriosis. I'm just so tired and depressed with this. I've finally managed to get a proper appointment with a gynecologist in a couple of weeks, but am now so worried that he'll just brush me off as several of you seem to have had bad experiences. I'm in the UK and it's an NHS hospital I'll be going to.

All I want is a laparoscopy to see what's going on - why does no one take this disease seriously? I'm not sure if I can ask for this? If anyone has any advice on how to go about things with the gynecologist I'd be grateful. I'm just so worried he'll laugh in my face.

I'm currently taking tramadol and paracetamol daily. Thanks to anyone who replies xx

[Agirl89]

Hi, I understand your concern. My own battle is in its 9th year. The best advice I have been given is to create a list of all your symptoms, including any little things and document bleeding throughly. This way you can attend your appointment with a definate set of questions.. and remember you are not alone good luck xx

[KM1986]

Yeah, I've been keeping a diary and have a clear list of all my symptoms so I don't miss any. Hopefully this will be enough to be taken seriously. Thanks for your reply - and good luck with your own battle xx

[Sheri26]

Just hope you get a good gynae doctor/ consultant that knows what they are talking about, I go regally to my local support group, they are all fantastic and great at sharing their experiences, I strongly recommend this to any one xxx

[minniepoodle]

Hi, I suffered pain all my life during my periods but only now at 40 have they told me I have widespread bi-lateral endo along with a multitude of adhesions and scar tissue. This was diagnosed after an mri scan and as yet I have not had any surgical intervention. In my case my saving grace was my gp, the first time I saw the consultant she told me that my tumour marker was elevated and a cyst couldn't cause that pain then said that my gp would need to look for other causes.

My point is in my case the gp was more helpful and still is, my treatment from the start with the consultant has been minimal. I also require pain relief daily and now require controlled drugs. Don't be shy to ASK AND ASK again for whst you want, if it hadn't been for my gp "pestering" the consultant I dont think I've even have a diagnosis by now.

[KM1986]

Thanks for all your input ladies - it means a lot. It seems like I may have to be quite assertive with the gynecologist to get them to act. When you're in hospital they can't seem to get you out quick enough and I'm just worried it happens again. I just so hope I'm taken seriously. I can't keep going on each day surviving on Tramadol ; ( xxx

[Brownlow]

Hi KM1986,

You need to ask your GP if the gynaecologist you are being referred to is an endo specialist. I suggest a referral to an endo specialist if endo is strongly suspected. There are a few courses of action you can take if the response is that you will see just a general gynaecologist.

You can say that an endo specialist would be more appropriate and ask for a change in referral. Endo specialists can be found here bsge.org.uk/ec-BSGE-accredi... or a provisional centre here bsge.org.uk/ec-BSGE-provisi... You have the right to choose your specialist but you need to convince your GP that you need an endo specialist first.

If your GP refuses, I know that you should have been offered a choice of specialists so it might be worth reminding him/her of that and then requesting an endo specialist of your choice. You also need to remind your GP of all the evidence and the fact that several doctors suspect endo. It would be best all round if your referral was more focussed on that. Also, a gynaecologist is already puzzled by your symptoms. Reading on this forum, I can tell that there are many general gynaecologists who do not have proper understanding of endo. Use that as proof to refer you to an endo specialist.

All is not lost if your GP proves to be unhelpful or if you decide you don't want to ask your GP for a change in referral. You can still go to the gynaecologist and see what happens. If you are unhappy with the outcome then pester your GP again.

There are people out there who do get diagnosed properly and access the treatment they need but they do not necessarily post on this forum. Most people come to this forum because they need help or have had bad experiences. I think the bad stories are sadly very common but there are cases that go well where people get good GPs who listen.

Let us know what happens. Best of luck!

[CharlieSays in reply to Brownlow]

Hi, sorry to hijack this thread, but my nearest Endo specialist appears to be at a private hospital - does anyone know if you can get referred to a private specialist throught the NHS?

[Brownlow in reply to CharlieSays]

Hi CharlieSays,

I think I've seen other posters on this forum who have had treatment at a private hospital via the nhs.

This has some info nhs.uk/chq/Pages/902.aspx?C... See the section 'Choose and Book'

Do post again if you have trouble and someone here with more experience of this might be able to help.

And if you have any success....do let us know so we can learn!

Good luck!

[KM1986]

Hi Brownlow - thanks for the reply. I hadn't really thought about a specialist in endometriosis. Having looked at your link (thank you) it seems to closest one to me (which is a provisional centre) is miles away so I would imagine they will be reluctant to send me there.

As I've waited so long for this appointment, I will see the gynecologist next week. At least I know that if I don't get a satisfactory outcome I have options - so thank you xx

Will let you all know how I get on - thank goodness for this website xx

[Brownlow in reply to KM1986]

Yes, probably best to carry on with the current plan.

For future reference, you can choose a specialist at the other end of the country if you wanted. It isn't up to others to decide that for you. The travel issue is your choice. It might be worth considering, depending on the outcome of your appointment. How far away is your nearest? Here's more info. nhs.uk/choiceintheNHS/Yourc...

Do your best to prepare well for your appointment and quiz the gynae on their experience in diagnosing and treating endo and their success rates for drug therapy and surgery. I quizzed my specialist on all of this and he was really happy to be asked. The reason I say this is because if you do have endo then your symptoms sound quite advanced and should really be treated by someone who deals with endo 24/7.

I was really ill in January with dreadful pain, nearly fainting and throwing up just like you. Even though I was in agony I avoided a&e because it was the weekend. I found out later that it was a ruptured cyst!

In the meantime, try supporting your body to deal with your symptoms. Try yoga or light exercise. Get plenty of sleep. Try the endo diet (plenty of info online). Even if it's not endo, this diet will be good for you. Plenty of fruit and veg!

Good luck! x

[Hidden in reply to Brownlow]

Hello.

I think it's great that we can choose where to be referred to and which consultant. The only problem is that when an emergency happens, you are often taken to the nearest hospital and not the one where you are being seen.

I had this last week. I was taken to my local hospital by ambulance. I can not fault the treatment I received for the three nights I was there. They have offered me an urgent outpatient appointment with a gynaecologist . (And also to have a camera up my bum with a general surgeon!) Problem is my specialist is based in a different NHS trust and not my local NHS trust. Do I stay with my specialist (next appointment is in may) or do I see the local gynea????

Just gets rather complicated......,.. I don't know what the answer is ?

[KM1986]

Aw Brownlow thank you! I will let you all know how I get on. Think I'm going to prepare a little more for this appointment than I originally thought - I never considered asking the gynecologist any questions in relation to their experience with endo - not sure if I'll want to know the answer!

Thanks again xx

[Sheri26]

I paid to see a private endo consultant in December, for a second opinion, as my support group all rave that he is fabulous. He has booked me in for a lap at the end of march to do full excision on my endo and if necessary a hysterectomy. He is doing this at the private hospital through nhs . My old gynae on the nhs couldn't see me till April by then I should be on road to recovery. Spending £200 to see private consultant was well worth it xxxx

[KM1986]

Totally agree that it's worth it. Do you know how much the lap will cost though?xx