THINK you have endo?...what are your symptoms?

[Nina0108]

Just wondering the different symptoms we're experiencing.

I havn't been diagnosed with endo...or anything for that matter!

Lets compare notes, here are my symptoms....

left pelvic pain for about 14 mos
right pelvic pain intermittenly for the past 2 mos (sometimes with left pelvic pain)
CONSTANT pelvic pain
back pain that sometimes wraps along my left side
nausea...everyday...all day for the past 2 mos
irregular periods for the past 3 mos (maybe before? i'm not sure because I didn't have a period secondary to nursing)
oh yeah..FATIGUE! how'd I forget that?!

But like I said, no diagnosis yet, I see my gyn tomorrow for my 2nd abdomenal/transvaginal ultrasound results and to discuss exploratory laparoscopy option...

[Ruby124]

Cam some one plz help me I've been suffering left abdominal pain for about 4 months now at first they put me on microgyon 30 but they were making my breast sore so I went back and they Put me on lorstrin this is when they put me bk on microgyon 30 again I was still getting pains so I went back and the doctor said it was my pill and gave me some pain killers so I wasn't convinced so went bk again and the doctor said it. Could be emdometriosis  but I've heard the pain for that is servere and I haven't suffered any more symptoms can some one help. Me

[thebrat333]

hi yes thats why I said get pregnant soon after .....lol yes i know sex is involved and that can hurt too

Yes it is hard work looking after a baby hope you have family nearby to help you out a lot

Just walking round winding the baby will hurt so get hubby to do that bit as can take a while especially at night time xx

[Lunabop25]

Thankyou not long til she arrives now...yippeeee

Im gonna have my implant fitted after the birth so really hoping it stops my cycles again quickly!!!  Will also try breastfeeding if i cn  

Cnt imagine looking after a baby in that pain...Eeeek

xx

[thebrat333]

hi there :)

first of all CONGRATULATIONS ON YOUR PREGNANCY :)

Hope all goes well for you

I bled for three months non stop after each pregnancy hope you dont suffer the same fate as me


Breastfeeding keeps the periods away for a few months :)

after that and just get pregnant again :)    lol that sgould cure it  :)  for a while anyway

xxxxx

[Lunabop25]

During the 9 years I was on Progesterone only type contracetion I had no symptoms of Endo due to having no period all these years.

Until I came off these to try and concieve my first baby...my periods returned with a debilitating vengence!!!  I knew these symtpms were NOT normal and my gp agree'd that I was probebly suffering from Endometriosis however dur to try for a baby would hold off doing a Laparoscopy until after the baby is born.

My symptom's
- Severe sharp stabbing pains on left side of pelvis
- Knawing severe back ache on left side
- Painful cramping on left side
- Heavy bleeding at start of cycle
- Dihorrea
- Syptoms of a uti infection, pain at end of urination, frequent urge and chill (no infection ever found in sample)  Always at time of period or just before
- Large blood clots

When I had my first scan at 12weeks the sonographer commented that left side of Pelvis didnt look right but couldnt tell anything else from sonogram.

After becoming pregnant I have had no Endo symptoms...until now 38w pregnant and almost all symptoms apart from bleeding are back, on doing some research I've found that at this stage of pregnancy the progesterone levels drop for upcoming labour and Estrogen increases.  This makes sense as same thing happens when you are starting you monthly cycle.

Hope she arrives soon so I can get my implant fitted asap!

I sympathise with you all suffering from this horrible disease

Sarah

[thebrat333]

Hi there

Haven't been on for a bit (you will get more replies if you start a new question)  

I had three children after being on the combined pill for 9 years with no problems. I suffered for three years before going on the pill but didn't see a doctor or anything and going on the pill was for not getting pregnant reasons......but it seemed to help my symptoms a lot!!!!!

When I came off the pill I more or less got pregnant straight away . (being pregnant stops the endo so if you want a baby go ahead and do it!!!)

I only really started to suffer again about 12 years after my last baby was born apart from really heavy periods during that time (which was sorted out with hydro thermal ablation) I stopped taking the pill after my last baby as hubby had a vasectomy.  Only been in constant pain for the last 6 months.

[peace1234522]

im 20 found out i had endo when i was 18 in 09 my ? is i have pd but bleed for 2 0 3 days that bad.. but 1st day was bad i was soo muh pain,,what can i do help my pain pls ,, what did u guys do? my ? is do any u have kids ,, my ob said by time im 25 cant have any babys after that why is that? do u no pls help me can im young ,, im in soo much pain where i cry i no im in 1st sage what she said when i went there last pls help me name hollie

[vienna_h]

I had bad cramps and heavy periods at12/13. In my teens, my periods were heavy and long (10-12 days), but I had regular cramps, not extreme pain.

When I was 19, after failed experiments with BCP (side effects unbareable) I had an IUD inserted. Thats when my symptoms really started. Terrible cramps before and during the heaviest days of my period (now only 8 days, but for 3 days I would soak through a super plus tampon within 3 hours). Then came the shooting pains. I would feel bloated and gassy, and have the most intense shooting pain in my rectum when I was on my period. Over the years, it started happening when I had bowel movements and on my period, I thought I would pass out. But the shooting pains came in waves of a few seconds. I also would get diarreha, so I suspected IBS. Some months there was lots of pain, sometimes none.

Then one day lst february, I had just started my period, and get terrible cramps, then came the shooting pains. I tried going to the bathroom to relieve the pain, but it got worst. Those shooting pains didn't come in waves of a few seconds anymore, they just persisted. half any hour of crying and screaming on the floor wanting to die I finally have enough strength to call for an ambulance. but the time I get to hospital I am no longer in pain but have cramps and soreall over. they take out the IUD. I get an ultrasound. I have cysts on both ovaries. They give me one pill for the pain and send me home. A month later I get another ultrasound. My right ovary is cyst-free, but the one on the left has grown to 4 cm. then an MRI shows it is filled with blood. The doctor made it sound like it was normal and to get another MRI in 6 months. During this time I have another similar episode of intense pain, albeit not as intense. Oddly enough, masturbating and having an orgasm made the intense pain go away! But I was so sore I could barely walk for two days. I was treated for PID just in case. I also noticed I was getting pms (irritable just before my period) never got that before...

Now I got the results of the second MRI. The cyst has not changed, and the doctor believes its either a hemorraged cyst that twisted or endometrioma. Given all the symptoms above, my money is on endometriosis. I've just started BCP again and will be seeing the gynecologist next week to confirm, likely will need a laparoscopy.

I'm 24, single, and had planned to get married and have kids around my mid30s, now my entire life is going to change, I'm not sure how to handle this I'm devastated and very depressed now. I don't want fertility problems and I definitly will not consent to have any organs removed.

[thebrat333]

Hi there

Oh so you do have endo ...you are not going mad!!!

Are you being refered to  a specialist to remove it??? surely they are not just going to leave it there??????

xxxx

Rest up take it easy   thanks for posting :)

[achilles2]

What is this with doctors leaving endo on the ureter? I have two surgeries for endo and twice my doctor removed the endo off the ureter. I am now on my second turn of Lupron-- my doctor uses the every 4 weeks one with add-back. I trust his judgement he probably knows more about Lupron than anything doc-- he is one of the original researchers of Lupron.

Get well soon,
achilles2

PS If you get shoulder pain from the CO2 gas use a heating pad on the shoulder works better than anything else.

[Nina0108]

Thanks for your wishes!

I'm home from the hospital now, the surgery took about 45 min. I have endo wrapped around my left ureter. My dr didn't remove the endo because of the location, he suggests Lupron. Of course I'm leary of Lupron, I plan to see a urologist for a 2nd opinion. Off to sleep I go...

[thebrat333]

hi there

good luck really hope they find something treatable xxxxxxx

[Nina0108]

Hey All!!

Just keeping you all updated, my exploratory laparoscopy is in 2 days!!!

I am getting a bit nervous but mostly because after this entire surgery I could still have no diagnosis :(

Anyway today is my last day of work then I will start some sort of bowel prep and continue with a light stool softner afterwards to prevent that lovely constipation!

I will keep you ladies posted!

[thebrat333]

Hi there

yes they really drag it out don't they ???

I also had 3 transvaginal ultrasound scans and each time a cyst would appear in a different place and of course they have to check it again a few weeks later because they are not sure if its a dermoid or not and if it has to be surgically removed ......finally they decided to do a laparoscopy and cystoscopy but the date is taking forever to come through ...I keep ringing them to annoy them lol  

Ahh yes never did mine when I had the really bad pain but they caused it lol!!!   Um yes they are hoping to see sites of bleeding inside you causing the pain um  good plan hope that works!!!

[rkwertz]

We're doing my 3rd ultrasound I'm December and it's going to be done while I'm having the abdominal pain in hopes that it will be more telling than the last 2...he said if we're lucky he can see the endo on there before doing a lap...it's just a guess game and it's taking forever I hate it!!

[thebrat333]

Hi there!!!  

Thanks for that :)
Was funny love to see his face if I told him to "shove it" he prob wouldn't understand as english isn't his first languageMy mum   and I have a job understanding what he is saying normally.

My mum also suffered with heavy periods like me but had a hysterectomy quite early on so don't know if she would have got endo or not (probably )

Sorry to hear you think you have it too ?? Are you due to have an exploratory laparoscopy to confirm it??

My date for surgery hasn't come through yet but if they don't do it by 25th January the hspital will get fined and I will be lucky to have it done by next christmas :(

[rkwertz]

My mom had 3 kids and developed endo after that and just had her whole uterus removed b/c she didn't want anymore kids so tell your doctor to shove it! Now my doctor thinks I have it too...runs in the family...

[thebrat333]

Hi there !!

lol can you remember being young and carefree and pain free before the age of 13 ???

That is a really young age to start a life of pain.

I had very painful (bent over double at school ) periods from age 13 but I didn't realise then that it wasn't the same for everyone and didn't even see my doctor. lol

Luckily I went on the combined pill at 16 for other reasons :) and that helped a bit

[ticked]

Well I started to have severe cramps after my first period at 13yrs old. By 15yrs old I had bowel issues and was labeled with IBS.

By the time I was 17 yrs old it hurt to have sex and to go to the bathroom.

After having my daughter at 25yrs old I started to go batty.

I was having rectal pains, CHRONIC nausea, pelvic pain, frequent urination, wanted to eat all the time, Cluster, aura migraines, sciatic pain, breast pain, acid reflux for a year, pain with intercourse, yeast infections.

If you see my profile that is what they found with all of these symptoms.

[thebrat333]

Hi there

Blimey!   You have got even more problems???

I think I am pretty lucky really  then. I don't have any other ailments apart from high cholesterol which I am trying to lose a stone for and back to docs in a few months for that!!  

Some of the people on here have so many ailments I don't know how they get through each day really.  

[achilles2]

I have been totally gluten and dairy free now for about 4 years. I do for more than endo I also do it because gluten causes migraines, nerve pain,  exhaustion, and I do not have the stomach issues I had in the morning. (I truly believe that I have Celiacs) I avoid milk because I react to the caisen and lactose by aggravating my asthma and making me sick to my stomach. (I have not figured out if it is one of many the triggers for my migraines.

[thebrat333]

Thanks for that !

I haven't tried the avoid diet thing just waiting for the confirmed diagnosis first and enjoying my food while I can .  

I did give up wheat and dairy for a bit a while ago as part of the blood group diet and it worked but really hard to stick to .

How are you managing ??

The cornflour substitute I used was awful lol

I did bake my own bread with spelt flour and honey and was pretty good but had to slice and freeze it as no preservatives.

I don't drink tea or coffee and just have green tea though which is a good thing as I read somewhere to avoid caffine too for endo.

I hate taking all these pills and they are so expensive too.  I was hoping to be pill free afterwards but from what you are saying that might not be the case :(

You were pretty unlucky having IC as well :(  hope I don't fair that bad when I have mine.

[achilles2]

That is awful that you do not even know who is going to do your surgery. I recently had my second surgery and I am on my second six month course of lupron with add-back (my first was after my first surgery.) I am hoping that this and continuing to take turmeric, bromelain, drink ginger tea, continuing my gluten free diet, and trying to avoid things like certain oils-- canola, corn, vegetable, will help by keeping down the inflammation and keep the endo under control.

achilles2

(PS While you are waiting you might see if Dian Mills (she is the one whose info I told you about) can even help you before you have surgery.

[thebrat333]

Hi there

wow he seems really good......my gyno did mention maybe getting the surgeon to do both but he said you don't know who you are going to get for sure until the day so um they had to book the other one just in case and if it is really bad will have to go to another town for the next surgery .  

I think it is on my bowel or bladder or both dreading it really.

How are you now????