Referred to a gynaecologist, what to expect? - Endometriosis UK

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Referred to a gynaecologist, what to expect?

katiesinead profile image
5 Replies

Hi everyone, I am just looking for some advice.

I'm in my late teens and since I started my periods right on my 13th birthday, they have been extremely heavy and painful. I have other symptoms such as back pain, pain opening bowels whilst on, also frequent urinating (I seem to go to the toilet every hour or so) and pain during sex. The pain I get during my periods feels excruciating and the flow is so heavy, I struggle to go out the first few days due to worrying about leaking. I wear Kotex night pads every day that I'm on, I wore one to bed and was asleep for around 6 hours, when I woke up I was covered in blood, I had leaked right through :(

At 14 years old I was put on the combined pill for around 6 months but it made me vomit almost every day so I changed to the mini-pill, and that worked for a while at stopping my periods. In the past year or so however, the periods have returned and I am in agony with it all :( After multiple trips to my GP he finally agreed to refer me to see a gynaecologist after I did some research online, and mentioned endometriosis to him (although he told me it was highly unlikely it is endometriosis as I am young).

Sorry for the long post, but can somebody please give me their experiences of what happens when you go to visit the gynaecologist? I've never been to one before and I'm quite anxious about it :) Thanks.

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Andys_Girl profile image
Andys_Girl

My first appointment I was just generally asked about my symptoms, and how I was feeling, I also had swabs taken, and as I was already on the pill was basically sent on my way just told to take my pill in three monthly blocks, the next appointment I seen a woman who wasn't the gynecologist i'd seen previously. She asked me all the same questions and gave me information about the mirena and the menopause injections and then sent me on my way still back to backing the pill, third appointment the same thing but with a male person I hadn't seen before, then the last appointment I had, I seen the gynecologist again and he said I would have to have the zoladex injections for three months then he would see me again in march to discuss further options. Because I am only 22 they kept fobbing me off saying it couldnt be endo because I wasn't old enough to have it, not taking into account i've had periods since I was 9! all in all my appointments consisted of talking to people mostly and it took me a year and a half of that to get to where I am now, yesterday i had my first zoladex injection and hopefully this is the road to getting an actual diagnosis and hopefully some help.

I'm not sure if everyone elses appointments have been the same but my main bit of advice to u would be to write down every single symptom you have and take it with u, as well as a long list of questions you want answered, if they dont mention endo at all then bringg it up and tell them you would like that to be looked in to, someone told me not to mention it and now I wish I had because maybe we would have got somewhere quicker rather than being told it was IBS or PID. Make sure you Are very clear with them that u want something to be done because my problem was seeing three different people I tended to be nervous and shy and didnt really stomp my feet enough and then i would leave the appointments upset and feeling like nothing had changed, which when it takes six months to get anothed appointment is pretty depressing!

Make sure you fight for treatment!

Sorry this is such a long comment but i hope it helps you get to where you need to be xxxx

JuCeb profile image
JuCeb

Hello. Sorry to hear you're suffering so much with your periods.

I like you have always had really heavy periods since they started in my teens, to the point that I had to sleep on a towel strategically placed most nights! I was also prescribed the combined pill at quite a young age to help the monthly hell, which thankfully it did but it also masked the real problem - endometriosis. I am now 38 and have only been diagnosed with it for 4 years so have had it for most of my life without realising.

A genealogical appointment usually involves them asking about your menstrual history and cycle, and may involve an internal examination, which tends to be more uncomfortable than painful (relaxation is key as I have learnt!).

It sounds as though you're on the right track by being referred to a gynecologist so hope you get it sorted with the best solution for you x

charlotte23 profile image
charlotte23

Hi lovely!

Sounds very similar to what happened to me in my teens, I'm 24 now and have only just be diagnosed with endometriosis. It can take many years to be finally diagnosed and its great you have already researched and mentioned this to your GP! So well done for persisting, as it's the classic fobbing off every time you go, it's a shame they don't take it seriously in young girls.

When I went to my gynaecologist she was amazing! The whole department was great and I can ensure you they will be very understanding and sensitive to you so don't be worried :). Just make a list of all your symptoms and try to pinpoint when you get it the pain worse and what not as they will ask lots of questions! You probably will have to have a scan (on a different day) to rule everything else out, this is no biggie at all. Also, whilst at the gynaecologist they may do an examination there, they will make you feel very comfortable and the more relaxed you are, again will be no biggie!

So don't be anxious, be relieved that you may finally get your diagnosis! They will give you options, remember there is no treatment but there will be something they can do for you to manage your heavy periods and pain! I'm on yasmin, this is a low hormone so I do get slight pain still but nothing as bad as what it was without it. It may take many months to get the best management but you will get there I can promise you :)

Good luck & keep us updated on your progress!

Charlotte x

spooky71 profile image
spooky71

I've only recently undergone surgery for Endometriosis and found the Gynaecologist to be amazing. He listened & understood totally and confirmed the only way to properly confirm if it is endo is a laporoscopic investigation to see inside your abdomen. This was a second opinion and I was glad I sought it. The 1st gynaecologist I saw was recommended on the private hospital website as sn 'Endo specialist', rushed our 1st meeting, didn't listen and carried out an ultra sound of my abdomen which was negative and I was promptly discharged from his care back to a Gastroenterologist.

When the second much more Compassionate Gynaecologist dealt with my case our meeting was simply a discussion wherein he took notes and made recommendations.

The investigative laproscopic procedure was very straightforward, day patient only, out of hospital by 3pm same day.

It confirmed extensive endometriosis which had spread throughout the womb, the bowel, bladder and ovaries.

I researched via forums such as this the gynaecologist I used on the second occasion and used Mr Pickersgill, Alexandra Hospital Cheshire because many women had very positive things to say about him on blogs & forums.

Personally I cannot recommend him highly enough. I understand he also works within the NHS if you're prepared to travel.

I'd recommend researching your Gynaecologist and do feel you have to use them, if there is someone better have a chat with your GP or your health insurer and use them.

The first meeting is very straightforward and the gynaecologist should listen to you and reassure you.

Remember you've been through hell and you deserve support & understanding. Don't accept anything less.

Good luck x

emkatie92 profile image
emkatie92

Your symptoms sound very similar to mine. I'm 22 and was diagnosed in August 2013. I spent a year between 2012 - 2013 whilst in my Second Year at Uni going back and forth to doctors as I kept having a lot of pain in my side and kidney area as well as getting a lot of UTIs. Everyone kept thinking it was kidney stones so I was sent to kidney specialists etc. It wasn't until I came home for the summer that I re-registered at my own surgery and saw my doctor who referred me to a gynecologist as she thought it was that. Although I was in a bit of denial because I felt she only said it because my mum had it before having a hysterectomy and it did not explain the UTI's and Kidney problems, and when I had similar problems in 2009 (which later turned out to be my appendix) they kept insisting it was endo then.

I did end up going privately because the appointment wasn't for another 5 months and I wanted it sorted before heading back to uni for my final year, but it is similar wherever you go just faster. When I first got there I was asked all the questions I had answered before. I was sent for a CT scan to check my bladder and kidneys first. That came back normal so at the next appointment I was told I needed to have a laparoscopy through keyhole surgery. From that they found a few things. One my pain was due to scar tissue from my Appendectomy a few years wrapping around my stomach and two they found very small amounts of endometriosis on my kidneys, bladder and uterus. Which did actually explain my UTI's and kidney infections and pain in my back.

When I went back to my gynecologist afterwards he told me to carry on taking my contraceptive pill but instead of taking the break each month I was to carry on a packet for three months in a row and take a break only four times a year, in a hope that this would reduce the rate that it would come back. Since then touchwood I have not been too bad.

But I would say as some advice to maybe write a diary, or keep note of the times you have your period and the pain levels, and even the pain in between and whereabouts it is. It will make it a lot easier to explain and remember if you have it written down. Also make sure you do not leave until you are entirely happy with what the outcome of your appointment is. Being young makes no difference, and someone will understand that. You just have to find the right person.

Hopefully it all works out okay :) xx

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