No answers

[MeAnonymous]

Hi,

I've been here for some time now, reading your stories but haven't had the courage to write, so I will try now and hopefully some of you will help me with some advice.

I'm 36yo, and always had period pain, some with vomiting and fainting episodes, but still it seemed more manageable than now. My doctor at that time said is probably because I have a retroverted womb and prescribed ibuprofen 3 x day x7 days as my very heavy periods lasted an entire week or more. I had better day and awfully days but tried to cope with it as best as I could. Few years later a met a gynaecologys and afer seeing me during one of my periods she told me that the amount of pain and blood I was loosing was not normal for retroverted womb.

All my other doctors have ignored my complaints about my pain and heavy periods and just cosideme unlucky, but my last GP has referred me to Gynaecology for investigation last year, the consultant was wonderful and very helpful, explaining that she thinks is endometriosis but the only way to diagnose it is through laparoscopy. I had a ultrasound done which showed that my fallopian tubes and ovaries looked quite stiff or immobile and that would be a sign of endometriosis covering them, but could only be sure after a laparoscopy.

My last appointment was in April with a different consultant, who refused to go for the procedure as to clearly diagnose me, even though she is quite sure is endometriosis. I was reluctant on accepting the mini pill she recommended as I have quite disturbing migraines and headaches but I didn't have a choice as she refused me any other treatment. The mini pill gave me constant headache and migraines the entire 3 months I took it until I spoke with my GP and advised me to stop it, as it didn't help anyway. Since April i haven't received any letter or sign from the Gynaecology, my GP has sent multiple messages and emails with no reply, Iv already tried many times to contact them but with no response.

Im getting desperate as the pain is getting worse and even though im not on my period I wake up at night because of the pain.

Now im thinking about going to a private specialist, but it's so expensive, I really don't know what to do next.

Please do excuse my spelling and grammar mistakes, I'm still learning

[K2023]

Hi, Do you have the referral letter or a letter that they send back to the GP and yourself with the findings ,It’s just usually the secretary to the Gynaecologist will have details on those letters to contact them .If you do I would ring the secretary and explain the situation and emphasise your pain ,if anything they will need to generate another appointment and I would mention not to be seen by the last gynaecologist.It seems to me ,you were well fobbed off,Endometriosis doesn’t heal itself and the mini pill wont heal the damage it’s already caused.It may help reduce further affect but not to heal it .I know the NHS is under great strain and it could be a very long waiting list to be seen again and that could be the issue here and maybe the reason you haven’t heard anything but you need to know either way.If you have private insurance then I would recommend going private ,but if not private consultant and Laparoscopy can be around £1,600 upwards .I hope you get sorted it’s an awful frustrating time to be in when you feel like nothing is being done .take care

[MeAnonymous in reply to K2023]

Hey,

Thank you for taking the time to reply, my GP referred me to Gynaecology last year in August, I had an appointment with the first consultant in November and few weeks after the ultrasound, the next appointment was in April with a different consultant. I have all the letters regarding my referral and appointments. The secretary is simply not answering my phone calls or my GPs emails. Last Friday they've sent another asking for urgent reply, as it seems they haven't updated any info or if they did the GP doesn't have access to it.

I don't have private insurance but done a bit of research and the cost for private laparoscopy without the consultation would start from £2800 depending on the situation and the findings.

Thank you so much for talking the time to answer me, its such a struggle a especially at work. Other people plan their lives around their children or loved ones, I have to plan everything around my period, and im so tired all the time, exhausted, it's taking everything from me, sometimes I don't recognise myself

[K2023 in reply to MeAnonymous]

it really is awful how much we have to battle for treatment and answers .oh it sounds like the department is completely inadequate,to not even be answering the GP.Is there any other Hospitals that the GP could refer you too .I think personally I would be taking it down a complaints route ,I’m not sure on how that’ is done but maybe GP reception could point in the right direction .I wish I could help further .I completely understand how your feeling it’s so unbearable some days just to get through the basic day to day tasks ,but since coming on here I have found support and it is nice to know your not alone .

[chelseagrl]

So sorry to hear you've been going though this process whilst in pain with little support. I am having a sinilar experience with my local hospital and thinking about going private for my next surgery . I agree with the advice above and would add you can contact the PALs service at the hospital and make a formal complaint. You can Google the contact details for both. When you complain and contact PALs do an overview of your communication to date and the steps you've taken to get support.

I would ask the gyane department to provide you the clinic notes from the session with the consultant and confirm in writing why this consultant refused a laproscopy and or treatment options.

There is info on the endometriosis UK website about how employers can support people living with the condition in case you want to dicuss support at work.

I would also encourage you to join a local online support group at Endometriosis UK and or the Facebook group. I've just started attebding my local one and the facilitators are very friendly and knowledgeable

If you go back to your GP you should ask that you are referred to a specialist endo centre rather than mainstream gynaecology. List of centres are here

bsge.org.uk/centre/

xx

[MeAnonymous]

Thank you so very much, for the reply, the support and advice, it truly means a lot to be seen and heard and understood.

I will follow your advice, probably my gp will ask to give some time to Gynae to reply to the last urgent request.

At work they want to help but can't truly understand, how can it be so bad, and the fact that I had no reply from Gynae in the last half a year makes them believe that is not really that bad.

[Starry1977]

hi, I went private but luckily I have insurance. I have heard though of ladies having a private consult and then the consultant putting them on their nhs list. My private consult was £200 ( I chose him as he is lead consultant at a endo centre for nhs) to give you an idea of costs, mine was though spire. My lap with excision was £4200 and an mri was £315. It maybe that you could afford part of this and get referred back. I also think they do payment plans.

[Emerlee]

hi, I’m so sorry you are going through this but please don’t stop pushing on to sort this! One thing I have learned through this process is that you have to advocate for yourself to get things sorted!

I was referred to a consultant for suspected endometriosis by my GP but because the waiting list was so long and I was struggling so much with symptoms I asked my GP to make the referral to a private endo specialist that I found online who also takes nhs referrals. I then paid £200 for a private consultant appointment with him. I saw him in 2 weeks.

He then referred me back into the nhs system for a laparoscopy for diagnosis and excision of the endo if found.

I was initially on the ‘waiting list for the waiting list’ for about a month until I made it onto the list.

I called the appointment team every 2 weeks to remind them that I would be happy to come in last minute/ be on the cancellation list.

I was then offered a cancellation appointment and was seen for my sugary 3 weeks ago. The woman on the phone said she remembered having spoken to me about cancellations previously in the week so thought she would offer me the appointment.

My initial consultant appointment was in June, so not too long a wait (after being initially told it was going to be up to a year to wait).

Hope this helps. They had quoted me £3500 for the surgery when I looked into going private for that too, but ended up having it on the nhs.

Moral to the tale… keep pestering and calling them (in a polite and friendly way!!)