please help!

[rachel12]

firstly: i'm 20, not pregnant and have no kids. sorry this is so long!


for about 6 years, i've had a lot of pain with my periods. my mother had awful periods and i was put on the pill at 15 (for migraines and heavy bleeding >7days).

the past 2 years it's gotten even worse. it's been getting steadily more painful, to the point i can't handle it. my mother had endometriosis (discovered when she had a hysterectomy), and so did all her sisters.

i had an ultrasound that showed polycystic ovaries (from memory >15 follicles on each, but i'm not really sure what that means, i don't think it was an issue) but nothing else. apparently an ultrasound doesn't show endo, but my OBGYN said "ultrasound mostly normal, so we'll just let it go". often, and sorry this is gross, maybe 2-3 days after my period (and only at this time) i have blood when i go to the bathrom. i don't know if this is related, but thought i'd put it in

the pain is just agonising. i have it almost every day, i can barely do what i need to do and spend every day on pain medication/with a hot water bottle (which seems to help). it's been getting consistently worse and is now almost constant and i don't know if i can put up with it anymore. i feel bad complaining because my ultrasound was normal, and i feel like i'm always in pain and sound like a hypochondriac. i'm in tears almost daily from the pain, it's awful. but absolutely nothing is showing up, and i seem perfectly healthy, and i just don't know what to do. i've kept a diary of the pain/bleeding for nearly 4 months now. i feel like even if it is endo, there's no point doing anything because really the only cure is a hysterectomy, and i desperately want kids in the future

what i need to know is: could it be endometriosis? is there any point going back to a doctor if nothing can be done? my aunt had a laparascopy (it was all up in her ribs and bladder) but it seems like a serious operation and i don't want to get that if there's nothing wrong with me. i feel like such a hypochondriac - is something wrong or am i being weak?

[JLeigh29]

You need to go back to the doctor and tell them you want something done. You are not being weak, this is really affecting the quality of your life.

It took 6 years for the doctors to diagnose possible endo for me, and once they said that was probably it, they were still reluctant to operate. Before they did, I was on strong painkillers. One GP suggested I take the pill without the sugar tablets for 2-3 months at a time and that helped, but the months I did take the sugar tablets were agony.

I had a laparoscopy and was in hospital for 7 nights, but I had severe endo. Often it can be done in day/overnight surgery. I have recently had my first child, so you can still have children too, depending on where the endo is. Untreated endo can result in infertility so if you do want children one day, do something now. I look forward to hearing how you go. Good luck.

[Laranna]

Oh Rachel I can feel your pain and frustration in your post. My periods were very much like yours right from the start. It took ten years for me to get diagnosed with endo.

What you describe sounds exactly like it. You need to go back to your GP and get a referral to a gynecologist. A laparoscopy will be the only way to diagnose the endo and see how severe it is. They will be able to remove it during the surgery. The sooner you get it seen to, the better. I don't think you would end up with a hysterectomy unless it was very much the worst case. So don't be afraid of that.

After my surgery, they told me I would never conceive naturally due to my tubes being blocked and so damaged. I conceived my son naturally 2.5 years later and my DD was also conceived naturally.

PM me if you want to chat more

[rachel12]

One GP suggested I take the pill without the sugar tablets for 2-3 months at a time and that helped, but the months I did take the sugar tablets were agony.

this is what i'm doing right now, and originally i could 'build myself up' and sort of prepare for the week, but now the pain is constant so it doesn't matter, although the sugar tablet week is just hell.


thankyou both so so much for all of your help! the fact that it could lead to infertility scares me the most, i think. it's comforting to hear that others have the same thing (although i feel awful you have to go through it too)

i wonder why it takes so long to diagnose? for something that can be so debilitating, especially.

is a laparoscopy worth it, do you think? i'm just worried i'll have such an invasive operation and they won't find anything, although then at least i'll know one way or another.

[Laranna]

If you are experiencing so much pain and it's affecting your quality of life, I think the lap is definitely worth it. They do keyhole surgery so it's not as invasive. It's usually done as day surgery, but be prepared to be kept in overnight if they find lots of endo. That's what happened to me. Recovery varies for everyone. I had 2 weeks off work, physically I could have gone back after one week but mentally/emotionally I needed the extra week. I'm glad I had it done because then I knew and I could manage things alot better.

[Kezzy]

I feel your pain. I am young too with no kids, been trying for a long time with no success. I have had bad periods for my whole life and always put off seeing someone about it because my worst fear is infertility. After my miscarriage in January i realised that i was able to conceive and that gave me the power to do something about the pain that was effecting heavily on my life. I had an ultrasound where they found no PCOS and so i am now booked in for a laparoscopy soon (public health, damn waiting lists!!) You are in no way overreactting to this pain & should not feel bad for wanting answers about your own body. A laparoscopy is necessary to diagnose endo, so without this, you will go without diagnosis. Get the op. And keep searching for answers. It is your body and your right. Good Luck =)

[rachel12]

saw a doc today - he's almost certain it's endo. he said it was severe and wants me to get a laparoscopy. i'm terrified of the op - how much time would i need off from work/uni? eluned you said about one week, do you think that's average?

thanks for all your help everyone, i'm just very scared!

[JLeigh29]

Good on you for seeing a doc! Please don't be scared about the op - imo, it's way scarier going through all that constant pain and the worry that infertility may result.

As for time off work, as I said earlier, I had severe endo but also ended up with an infection afterwards so ended up in hossy for 7 nights (was supposed to be one night) and had 3 weeks off work. I didn't feel 100% again for about 6 months though. I suppose it depends on how physically demanding your job is as well as how severe the endo is as to how long off you might need. I know a few people who've had laps as day surgery and had less than a week off work. GL

[tinkerbelle]

Have you thought about seeing a naturopath that specialises in fertility? They can make herbal formulas that might help. Or a herbalist maybe..
I had really heavy periods and irregular cycles and herbals helped even it all out..
Also have you been checked for celiac disease? - i think there are some links with PCOS and endometriosis. do you have problems with wheat/gluten and lactose intolerance and lots of tiredness? these sort sof symptoms could indicate possible celiac.. but you have to persist in finding a doctor that would actually test you as most of them are just so unaware of this condition...
what state are you in? i know a naturopath in perth that might be able to help..
heres a couple of interesting links - just anecdotal info..
http://www.gluten-free.org/hoggan/endo.txt
http://barrenwheatfield.wordpress.com/end-no/

[rachel12]

hey tinkerbelle - i was actualyl diagnosed with celiac a year ago in the midst of trying to diagnose this pain! now that all that has cleared up and i don't eat gluten, i still have very bad pain and so we're moving on to the next stage

i've tried acupuncture and herbs, the acupuncture helped with pain that radiated down my legs during my periods (100% gone!) but unfortunately not with the other pain.
but good work guessing the celiac!


JLeigh, i work in an office so that's not really too bad (just the bending/reaching for things), but its uni i'm more worried about. walking to and from class can sometimes be a 20minute walk, which is nothing i know but i can't imagine wanting to do that after surgery, especially the steps etc.


everyone is so nice and helpful! thank you so much everybody! also strange question i know but i read somewhere or was told, i can't really remember, that they put something up your vagina during surgery? but after a quick google it just seems that its all small incisions in your abdomen. can anybody clarify?

[Laranna]

Rachel, I'm glad to hear things are moving forward on your diagnosis. Please don't be afraid of the op! It's so worth it to get diagnosed and significantly reduce if not eliminate your pain

I was working an office job at the time of my lap and one week off was sufficient, although I ended up taking two weeks as I mentioned before due to mentally needing the extra time. I think two weeks is a good time off. Allow yourself a little bit more time to walk around uni as you'll be moving a bit slowly to start off with. It's actually a good idea to get up and walking as soon as you feel able as it will make you feel so much better.

For a lap all the incisions are in the belly. I had 3 - one in my belly button, one on top of my bikini line and one in between those. I also had a hysteroscopy which is where they look inside your uterus via your vagina - this might be what you're thinking of.

HTH