1st gynae appointment. What to expect before diagnosis? Advice please?

[Andys_Girl]

Hi everyone!

 After reading a few posts, I was wondering if anyone could offer me any advice / tell me what to expect (as I always end up forgetting everything once i get to the doctors, so want to be prepared)/ even tell me if they think my symptoms could be endo? I am 20 years old and for the last year I have been back and forth to the doctors with back pain, painful bowel movement, urine infections and cystitis. My first appointment was August last year where the docs thought I had a kidney infection as I had back pain and a uti, after having a period with cystitis . They put me on antibiotics which cleared up the uti but not the backpain, so I went back again and was given anti inflammatories which also didnt work, so on a third visit I was given Buscapan which worked for a while. 

Six months later I was suffering again with back pain and constipation during a period, this time there was no uti and the doctors couldnt work out what it was so booked me in for a scan of my abdomen, but they didnt find anything, I was left with no information on what to do next so just got on with things for a while.

Another six months on, I went back to the doctors with major diarrhea,(one week before my period) I was running to the toilet after every meal, major stomach cramps, fatigue etc so the doctor said it was IBS and sent me on my way with more buscapan.

2 weeks later (the diarrhea stopped the day my period ended) the diarrhea had stopped but the pain at the bottom of my back, the bloating of my stomach, the pain in my stomach, dizziness, tiredness and emotions I was experiencing was all too much so I went back to the doctor who has now referred me to a gynaecologist, so I am waiting for my appointment to come through, but I have no idea what to expect...

symptoms I have:

♡Blood on tissue after a #2 

♡Painful periods (first two days can hardly move then the rest of the week I cry at everything).

♡Painful sex if deep :/

♡excruciating stomach ache after sex

♡Blood after sex sometimes

♡extreme tiredness

♡extreme emotions (I cry at everything)

♡Back ache right at the bottom (when led down my stomach feels bloated and my back feels like there is something pushing my insides into it), so bad I can hardly move at night.

♡Bowel movements change around a week before my period (either constipation where it hurts too much to go, or extreme diarrhea where I spend half my week on the loo)

♡Dizziness

♡ Thick clots in my period.

♡shooting pain up the bum

♡Shooting pain down the back of my thighs

♡A strange feeling in my front area, like I need a wee but I cant go, but not cystitis, gives me stomach ache

♡Thirst

♡cold hands and feet all the time

♡ headaches

♡ Feelings of depression sometimes

.Other info:♥ Currently on the pill. have been for four years.♥Periods started at age 11, always been heavy.♥ No known family history

Feelings:Currently feeling so stressed out and tired, and worried about what to expect. I live 120 miles away from my family and live with my boyfriend and his uncle, two men that dont understand what I am feeling at the mo! I really want a diagnosis so that I know all this isnt in my head, and so that everyone else can see i'm not makin it all up, but at the same time i'm scared it is endo and its going to ruin everything I have ever dreamed of.Any advice for information will be really appreciated.

Feeling very alone right now! Sorry this is so long!

Andys_girl

xxx

[teacosey]

Hi honey,

Print out that list that you have posted, and take it with you. Well done for keeping such a good record of symptoms! That is vital!

It does sound very much like you might need a diagnostic laparoscopy. They put cameras in a couple of keyholes in your tummy. When you go for your first consultation, if he says that he is booking you in for a laparoscopy, there are some things you might want to think about.

For example.... When I had my first consultation, I had a list of symptoms just like yours. The Gynae booked me in for a laparoscopy, and I signed the consent form then and there. I did not realize it could be anything more than some cameras.

But I had not read the consent form properly. I had signed to say that they could "deal with" anything they felt necessary while I was knocked out. So, when I woke up from my laparoscopy, they told me that I had Endo so badly that they had actually had to do full surgery. They did an ablation and removed a cyst and (their words) "repositioned" my bowel. The diagnostic laparascopy only takes 20 minutes or so, but I had surgery for over 3 hours.

The surgery did go well, BUT I would never go to a consultation again without checking what I was signing. Always read the consent forms properly, and read all the other sheets and handouts he gives you. Ask any and all questions that pop into your head, including questions about the risks of the procedure and the risks of anaesthetic. And if you are not sure, you can always request another follow-up consultation or see your GP with your questions BEFORE the procedure takes place.

Also, if at all possible, take your boyfriend or a close friend with you to the consultation. This is important because they will be listening in--if there is anything the Gynae says that you didn't catch, they will have heard it. And it prevents that embarrassing, lonely feeling of talking to a doctor about very personal things all on your lonesome!

Keep your chin up and, again, well done for keeping such good records of your symptoms,

Tea Cosey x

[Andys_Girl in reply to teacosey]

Thanks Teacosey!

I really appreciate the reply, i'll make sure to copy that list out, as well as any questions and take it with me. I've asked a good friend if she will mind coming woth me, so hopefully I should have someone with me. (My boyfriend is a lorry driver, away most of the week so hard for him to make it )

At the first appointment is it likely to just be questions or should I expect an internal examination and a possible arrangement of a laparoscopy? How long does it usually take for one of those?

I just feel scared because i've seen so many people say that its taken them years to get anywhere and I don't think I could handle that. Since my last period finished (a week ago today) I have been in agony. My back feels like someonr has got their hand inside pushing all my organs into it and my tummy feels like theres another hand pulling everything downwards :(! I am so tired all the time too, finding the energy to even eat ishard lately :(! I'm a care assistant who is supposed to work 12 hour shifts ( i have two this week which I dont know how im going to make it though them) and lately i've had to go home early because of dizzziness or not go in at all. I am so fed up of it all. I feel like an old woman not a 20 year old. I spend weekends in on the sofa cz im so tired and havent got the energy to go out

I'm so glad I found this website to finally talk about how I feel because its so hard feeling like no one understands :(!

Thank you teacosey! xxx

[bonygirl1]

Hiya hun, teacosey has given you great advice and I'm so glad your friend is going with you. I did have an internal at my first consultation, hadn't even thought about it, but i would recommend taking pain killers before you go. After the consultant did the internal she was positive it was endo and had me booked in for a lap. I was given lots of info about the lap procedure and after care from the nurse. She was fantastic and I felt much more comfortable asking her questions and she explained things to me in simple terms!

Just need to say you should be proud of yourself writing down all your symptoms and with such detail, wish I had done that for my first consultation.

Good luck and do not feel alone as we are all here to support and guide each other. Take care X.

[Andys_Girl in reply to bonygirl1]

Thanks for sharing your experience bonygirl, its reassuring to hear that other people havent had to wait for years to get treated.

Thanks i've just written down anything and everything that i think might be a symptom.

Currently curled up on the sofa with a hotwater bottle, hoping I feel better at 2 to go to work.

xxx

[Andys_Girl]

How long did most of you have to wait for a gynae appointment? I am feeling awful and feel its pointless to make another docs appointment (would be my third one in three weeks :/ ) but dont think I can wait weeks to seea gynae :/. When they sent me for a scan it took two months to come through :/

xxx

[teacosey in reply to Andys_Girl]

Hi Andy's Girl

I had changed to a new GP because I was getting nowhere. Once I saw the new GP things moved pretty quickly: In the August my new GP referred me to a Gynae. The letter came through a couple of weeks later, for the October. So a two month wait. But at that consultation, the Gynae booked me in for a Laparoscopy which took place in the December. So five months in total.

Five months might seem like an eternity. But one way of looking at it, is that it gives you time to think and to keep a good record of symptoms. From seeing my GP in the August, I kept a daily diary of bleeding, libido, bowel movements, headaches, days off work for sickness, dizziness etc etc. When I got to that first Gynae consultation in the October, it was my firm answers from my diary-log that convinced him then and there that I needed a Laparoscopy. And I honestly do think that you need one.

I am absolutely positive that keeping good records of symptoms is vital, because I had gone to my old GP over and over again but with no written diary, and each time I was just told "You have IBS! Change your diet and excercise more!"

Incidentally I still keep my daily symptoms diary so that every time I have a consultation with my Endo-Surgeon I have accurate information to discuss with him. It is key. And it helps you to feel like you are doing something pro-active about your illness.

Best wishes,

Tea Cosey x

PS. As for getting through work and being tired all the time---what I call "The every day struggle to survive"-- I can tell you what I do. I take low-level painkillers (always with a meal and lots of water to protect your liver!) such as paracetomol. I record all pills that I take in my symptoms diary.

And also I did adjust my diet to exclude foods that make you crash and feel sluggish, and that are hard on the bowel.

There might not be any one solution to make you feel healthy and energetic like other 20 year olds, but perhaps a combination approach will help. It has helped me.

[Andys_Girl in reply to teacosey]

Hiya Tea Cosey.

Thank you for your reply! I have started a pain/ symptom diary today, and tried to go as far back as I can remember, writing down anything that might be connected. I've been suffering with heartburn a lot since yesterday, which until I read it on another person's post, I didn't realize could be linked to endo, so I've even written that down.

I think writing it all down is a really good idea as I've been to the doctors so many times in the past year, and every time I've just been asked for a urine sample, bloods and a "feel of my tummy", and then sent on my way without any diagnosis or help, and most of this is because I've only been focusing on the "pain of the day" not what else has been going on in the build up to going to see the doctor, so thank you for that bit of advice, from now on I am writing everything down!

You're right, five months feels like an eternity, but I think I will feel much better when I get that letter just arranging an appointment, the sitting and waiting is just as bad as the actual pain itself! I am not a very patient person either :(!

Thank you for the advice on my diet,I will look into some softer recipes and see if that reduces some of my symptoms. I might try some painkillers too, at the moment, I've been struggling through the pain with hot water bottles and hot baths, as I'm not great at taking big tablets and the liquid stuff doesn't touch it! I might try taking them in my food or something

Thank you ever so much for your advice and help

Andy's_girl

xxxx

[Catness]

Hello Andys_girl,

As a 23 year old I feel your pain. I am forever wishing I was able to be care free and mobile like my friends however, as you will know it isn't so easy when you have these kinds of symptoms. I had symptoms very similar to you and in July had a diagnosis of Endometriosis and Interstitial cystitis. I was very scared of even going to the GP about my symptoms as I have had bad experiences before, so I bit the bullet (and my bank balenace) and went private. Because of this I can't comment on waiting times but for me from first consultation to laparoscopy was 4 weeks.

I think that what teacosey has said is really important about diet and you may see I have made a couple of posts about nutrition and how much what you eat has a massive impact on symptoms. For me the worst symptom is always the bone-aching exhaustion that goes well beyond the label of being "tired". This is also the hardest symptom for me to explain to anyone. I work a 40 hour week and have a 2 hour drive everyday and at one point this seemed impossible, but something I had to do to pay my bills.

I also didn't want to take any of the hormonal treatments that were being offered to me or the low-dose anti depressants that act as a pain killer for my bladder. I think these options work brilliantly for some people but they just weren't for me. Therefore the only option I had was look at how I was eating and how I could change it. I really recomend this book by Carolyn Levett:

Recipes & diet advice for endometriosis: comprehensive diet and nutrition advice to help reduce the pain and symptoms of endometriosis

She also runs an amazing website which I can't find the link to at this moment but can find it later if you are interested, it is in previous posts I have made about nutrition if you wanted to get it from there.

I think as a starting point though if you have such problems with bowel movements on and around your period cut out anything stodgy that will be putting pressure on your digestion. It may be of interest to you to know that statistically women with Endometriosis are more likely to be gluten intollerant (and the book above reiterates this. Caffeine is a big no if you have a sensitive bladder and be careful of the old cranberry juice as its acidity can often do more harm then good. I also cut out dairy which helped with the pain and heavyness a lot and I am a vegetarian anyway and this also helped (my diet is very extreme though! you may not need to be this thorough)

Through diet I am able to deal with the day to day a bit better. Love the phrase " The everyday struggle to survive" as this describes it perfectly! I am back at the gym and have a better social calendar now whereas before it wasn't an option.

When I went to the consultant I had a list of symptoms like yours so do print that out, I also tried to put them in some kind of date order and related them to previous GP visits (I went back years in some cases). This way my consultant was able to piece together my Endometriosis history and some symtoms that I didn't even think could be endometriosis turned out to be quite common and this helped to speed up the whole process. It's great that you have a friend going with you and perhaps, if possible, could she drive? I felt a little overwhelmed afterwards and thankfully my mum had driven which was a real help.

Do expect an internal. Thankfully though consultants and gynaecologists tend to be A LOT better at these then GP surgery staff and they understand you are in pain and how uncomfortable it can be so I didn't find this part nearly as uncomfortable/embarrasing as I have done in the past.

I'm sorry to hear you are in so much pain I don't know what else to suggest for that apart from hot baths, hot water bottles and stronger pain killers from the GP).

The biggest help I gave myself though was giving myself a break, I tended to be so critical and depressed that my body wasn't working the way I wanted it to. However, taking the pressure of myself and knowing that I had the appointments booked to start to recover was a huge help. I am also going to the Endometriosis UK support group for my area in September and I think meeting with women who can empathise with what I am going through. I too, find this website invaluable and don't know where I would be without it! I also had to turn my mind into getting better and tried to shelve the worry about the job, my sexual relationship with my partner etc. These things have a tendancy to eat at us and we need to protect ourselves and heal first and foremost.

Hope that helps and you start to feel better. Let us know how it goes xxxx

Catness xxxxx

[Andys_Girl in reply to Catness]

Hi Catness

Thank you so much for your reply, there is so much useful information in it! I never realized that diet was so important, and as for cranberry juice, I am shocked, as whenever I have had cystitis etc, I have always ran to the shop to get some! Always been told its good for stuff like that!

I wish I could afford to go private, as a student, just going into my last year, trying to save a deposit for a house with my boyfriend, its just not feasible :(! The waiting is just killing me though, I just want someone to tell me that its not just me being lazy... Do you understand what I mean? Sometimes I feel like I should be up doing something, anything, but I physically don't have the motivation or energy to move, which then makes me feel lazy. I'm not exactly fit and healthy, but I don't like badly either, I eat everything fresh, and very rarely drink alcohol, my only downfall is chocolate :(! Especially when I'm having a particularly hard/ lack of energy day. Fruit would probably be a better option though haha!

The bone-aching exhaustion that you describe, is the best way i've heard to describe it yet, it really is down to the bone exhaustion. My eyes feel like I am holding them open with matchsticks half the time. I am pale, and have big bags under my eyes. You'd think, by looking at me, that I'd worked a 40 hour week! In reality I have only managed 9 and a half hours out of the 40 I was supposed to do this week! :(!

Thanks to you and tea-cosey, I have taken your advice and started writing down all my symptoms in my diary, which I will be sure to take with me. Anything which might speed the process along! I think I will definitely be asking my friend to drive me to the appointment, I will be a nervous wreck before hand!

Once I have a diagnosis / some idea of whether this is really endo, I think I will look into coming to an endometriosis UK meeting, and bring my partner too. As understanding and comforting as he has been, it doesn't stop him wanting the fun stuff too, which right now I just don't want, not only for the fact I am exhausted, but because I can't be dealing with the excruciating tummy ache afterwards. :(!

It is so nice (in a weird kind of way), to hear someone else around my age, feeling the same way. It makes me feel a little less like it's all in my head. So thank you so much for your reply, and taking the time out to find all that information on books and diet for me. I will spend a while now looking at some of it, and see if there are any recipes etc that I can try over the next few days to wake me up!

Hope to hear from you soon

Andy's_girl

xxx

[Andys_Girl]

Hey Tea Cosey and Catness!

Thank you for both replying with such detailed and useful answers!

Sorry for such a delay in replying, it has been a stressful few days for me, which has totally wiped me out, yesterday I came home from work after 4 and a half hours (was supposed to be doing a 12 hour day) because I just could not function anymore. My head felt too heavy for my neck, my eyes stung like they'd been open for a month, and my legs felt like lead. :(! Had to cancel another 12 hour shift today because I am just dead on my feet. I thought symptoms were supposed to improve after your cycle? I am now nearly 2 weeks past my last one, I was hoping I'd feel slightly more me now! It's my partners birthday tomorrow, and his family want to have a barbeque, but I just don't have the energy to do a party.

My boyfriend told his mum that we think it is endo, and that I am going to a gynae, which I didn't really know how to react to it, I feel like talking about it to anyone I know, is making it more real, and I didn't really want his parents or my parents to know about it until I had a diagnosis, especially his mum, as she has always treated me differently to his brothers girlfriend, because she has given her a grandchild. If I can't do that then she will probably never talk to me again (might not be such a bad thing though!).

Anyway after ranting I will reply to you both individually now, just wanted to have a little rant and let it all out. Its 5pm on a Thursday night, and i'm already in my dressing gown with a hot water bottle. I feel completely zonked, and can't wait to go to bed (not that i'll be able to get to sleep). Does anyone else suffer with that? feeling exhausted all day, fighting to stay awake, then going to bed and tossing and turning until the early hours?

Hope you two are both okay.

Andy's_Girl

xxxx