Hello, I am due to see my gynae, what do you think...?

Ashleystar · 01-19-2009, 01:35 PM

Hello,

I have had PCOS for years, but it is under control better than ever. I am using Yasmin, and usually bi-cycle my pill which helps.

However, my gynae is looking into the possibility of endometriosis since I am showing symptoms of it, and nothing seems to help. He said this 3 years ago, but you know how slow these things can be...

I'd be really grateful if those of you with endo could read my symptoms and tell me what you think. I feel so lost at times, and having time off work for appointments raises eyebrows and it makes me feel embarressed!

Ok, so my symptoms are:

* Pain all throughout my cycle in lower abdomen, back, hips and in uterus and ovaries (regardless of whether I am on the pill - though it does decrease it).

* Terribly painful periods (regardless of amount or length).

* Strange sensations, like sore "cotton wool" pain in my tummy.

* Tummy problems before and during period.

* Painful sensation when needing a wee.

* Pain during sex and ultrasound scans.

I don't think this is normal, and it really confuses me. One minute I can be fine then suddenly WHAM! It hurts...

Would appreciate any advice or comments. I see my gynae next month and I may have a laparoscopy this year according to him. He would also like me to start tri-cycling my pill, which I am ok with, but prefer to just take 2 packs as it makes me feel very tender.

Thank you for reading xx

DiamondInTheRough · 01-19-2009, 03:08 PM

Hi Ashely,

It definitely sounds like it could be endo. Three years is a long time to get your doctor moving on doing the lap. I see my Gyno next month, and hopefully she'll book my lap.

Ashleystar · 01-19-2009, 04:44 PM

Yeah, tell me about it! I really have been messed around, despite constantly complaining of these symptoms, I have been told to go and deal with it. Well, my gynae is taking notice now I hope!

Thank you for letting me know. I have tried to get them to take me seriously. I have said "it's not that I WANT to have endo, it's that i seem to have the symptoms and would like a diagnosis!" But only now is this being listened to.

I think it is likely that I will need a lap since even when bi-cycling or tri-cycling my pill, I have these symptoms. They don't disappear. It has affected my general health, my relationship and my work for long enough!

I feel scared to be intimate with my wonderfully understanding partner in case it hurts me. And so I feel useless and he feels slightly rejected (unless I explain exactly why). It isn't much fun.

My gynae said a few years ago that if I do have endo, Yasmin is the best combined pill to be on. It seems better than when I was on Desogen/Marvelon and also when I have tried progestogen only pills such as Cerazette. I don't know, I am confused and a little worried.

xx

Ashleystar · 01-20-2009, 03:29 PM

Hmm...today I am in pain. I got dressed this morning and just as I sat down I felt my ovaries as though they were the size of grapefruits! And so so tender. My whole lower addomen right down to the bottom of my *cringe* nether regions... It is constantly like that, but I noticed it more all day today. Very uncomfortable.

OliviaLeigh · 01-20-2009, 03:42 PM

Abdominal pain should never be taken lightly as it can mean very serious problems. You need to track everything - your period, exercise, PAIN, anything you take (and how it helps), etc... This will show the doctor what is going on and be able to isolate the most obvious cause of your pain. It sounds like you need to be very aggressive with your dr. Check out the Endometriosis Assc and do some research. Take this reserach to your dr and tell them you want to be checked for Endo.

Lap surgery is the only way to diagnose Endo and the best way to eliminate the Endo from your body. Make sure your dr is very well trained with Endometriosis. I fear some dr's shy from lap surgery b/c they are not confident in their skills. If possible, find a dr that is recommended either by other cysters of the Endo assoc.

Ashleystar · 01-20-2009, 05:50 PM

Thank you for your help. It's not that I have been passive about it, I have tried for years to point it out. But even my gyno decided to concentrate on the PCOS side rather than what was causing me pain etc. I have been researching. I have nearly all the possibly symptoms and will push for a lap unless my recent unltrasound shows something.

Thank you xx

OliviaLeigh · 01-20-2009, 09:48 PM

Good I'm glad you are getting an ultrasound. Persistent pain is not easy to deal with and can be very serious if left unattended. I'm worried for you that BCP has not helped at all. That means that you need more help - please find it

Be persistent and know that this pain is not normal.

Stacie M · 01-20-2009, 10:37 PM

Sounds a lot like the symptoms I have. I had a lap and it did confirm the diagnosis of endo. I hope you get your doctor to listen to you. If not, change doctors!

Ashleystar · 01-21-2009, 10:23 AM

I have changed doctors many times, it is the lack of good gunaes in my area I think. Also, now I am nearly 23, I think he is listening to me more than when I was 18/19. When I say (in front of my mum) "Sex really hurts!!" to him, he knows I'm being serious!

Grr....hopefully will be able to get him to at least book a lap. xx

Ashleystar · 02-07-2009, 11:40 AM

Hey,

I just needed to get this off my chest. I am really fed up with the undiagnosed but very apparent pain I am in. I decided last night to worte down all of my symptoms, to see if I could make sense of them. I will take the list to my gynae in a couple of weeks. I try using painkillers but they only take the edge off. I am losing sleep every night, feel low and thoroughly fed up. My symptoms seem to be less PCOS and more Endometreosis related in my opinion!

I just wanted to write my list on here, and if you don't mind reading it, please could you let me know whether it sounds like endo to you (if you have endo).

Thank you.

So, here goes...

- very painful periods, regardless of length or flow
- pain during and after sex and any internal examination e.g. ultrasound
- chronic pelvic and lower back pain
- pain in and around vagina
- painful bowel movements
- pain before and duing urination
- nausea, fatigue, lack of sleep, depression
- pain in legs
- clots in periods
- headaches
- pain in neck, arms, shoulders
- VERY sore ovaries and uterus
- odd tenderness in certain ares of abdomen, gets worse before and after period.

These symptoms are constant.

I'm bored and feeling so rubbish today. I feel like when I tell a doctor this, they treat me like a hypochondriac! But it is true, I live with it every day!

Anyway, please let me know what you think... xx

OliviaLeigh · 02-08-2009, 09:34 PM

It's very possible with your symptoms that you are suffering from Endometriosis. However, there are other, very serious, problems that can cause the pain you are describing. I'm very sorry you are dealing with this on a daily basis and I think you need to push your doctor for lap surgery to check for Endometriosis.

I've told you before what really helps the doctor is to see a pattern. This will help determine what all should be checked for and what kind of treatment will be appropriate for you. This is a good list and putting it on a calendar would be very useful. You mentioned intercourse - are you still able to have intercourse? My dr told me she knew I was ready for Lap surgery (well one of the reasons...) was when I told her we were TTC, but we had to stop having sex! She knew I was in a serious amount of pain.

When do you see your doctor again?

Ashleystar · 02-09-2009, 02:12 PM

Hello, thanks so much for your reply.

I see my specialist in 2 weeks. It is weird, today I came on my period and it is relatively easy to deal with (I'm on Yasmin, perhaps this is why), yet all month long I have been in pain, as described above. Maybe I'm having a good period so far, as usually they are excruciating!
I am writing everything down and trying to fix everything to a time to make it easier for me and my gynae.

I will update this when I has seen him.

It just gets so confusing. I read other people's experiences etc and think "am I just moaning?!" but I seriously do suffer most of the time from pain and discomfort, and I'm sure that shouldn't be so. It affects my confidence and motivation to go out as well, which has an effect on my social life too. xx

OliviaLeigh · 02-09-2009, 04:16 PM

I have good days and bad days with Endometriosis (well almost all GOOD now on Lupron!), but I had great difficulty before Lupron. It was very easy to get down and upset, but sometimes I had to take a step back and tell myself not to let the pain control me. My dr kept pushing me to work out, etc while in pain b/c it does help and it makes you stronger (physically and mentally). Focus on what you can do and be proud of those accomplishments. Also look into the foods you are eating – organic food is the best b/c there are no added hormones. If you can find a few things that will help – you will feel much better. Ironically, my best friend has Endometriosis (she just found out 4 months after me) and her and I of all my friends are by far the most positive and strong women. It’s amazing to me how some issues can make you stronger and a better person overall. All that said – it is OK to have bad days. Everyone does.

You said you are on Yasmin – do you think you are having emotional side effects? I was a wreck on birth control. BCP helped very little for my Endo and made me a very sad and anxious person!

Ashleystar · 02-09-2009, 04:54 PM

I am so happy for you with your Lupron success! I hope it continues!!!

I have really been watching what I eat. For instance, I drank some diet coke the other day without thinking, and felt crap for two days after, just like I do when I drink coffee, so I think caffeine affects me. I have cut out meat and most dairy and eat good fruit and veg as well as wholegrains, which makes me feel good!

I really hate working out when I'm feeling bad, but going for a brisk walk makes me feel good.

I actually feel more stable on Yasmin than when I go it alone!! On other bcps I was very over-emotional, but Yasmin seems good for me. However I do wonder whether my pain during my cycle is increased through using it, though without it I am really bad so there's probably not much difference. My periods are also very light which is such a relief!!

I also really believe that with everything I have been through with my health (PCOS too-though this seems far better now), I am far stronger than any of my friends. They crumble at anything, but I am not phased. I feel like a warrior at times lol!!!

Thank you so much for your helpful advice! I hope that my gynae is useful soon! xx

Eva37 · 02-09-2009, 05:16 PM

im waiting to have a lap done, my syptoms are like yours. Ive been waiting about 8-9 YEARS for a gynae to check for endom.