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

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 (abdominal)/transvaginal ultrasound results and to discuss exploratory laparoscopy option...
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Avatar_f_tn
How did your appt go today????
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1839773_tn?1330047553
Sorry so late...
My u/s was pretty normal except a grape sized right ovarian cyst which is probably due to ovulation.

My dr thinks I may have endo (duh!) or scar tissue (how? Idk) causing the sx, so of course I've decided to move fwd with the ex lap. If he finds something during the surgery it will be removed unless its too complicated in which case I'd be referred to a specialist.

At this point I'm waiting for the surgery scheduler to call me to schedule d-day! I'm thinking the 1st wk of Nov would be good for me but well see...I'm no longer anxious I wanna "just do it" and move on from there, where ever "there" is.
I'm also frustrated though because I feel like my life can't move fwd until the surgery/recovery. Feels like I'm screaming inside!!!

But thanks for thinking of me :)
How's life treating you?...or, how's the pain treating you?
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Avatar_f_tn
Well at least you have an answer kind of. That's the week I am having surgery as well. I am just scared that they will do the surgery and find nothing and I will still have no reason for the pain. Because this has been my luck in the past!

I'm hanging in there. Still having a lot of pain. Taking the tramadol when I have to function and narcotics when I don't. Just waiting on surgery. At least with this forum I know there are others like me!!!!
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1839773_tn?1330047553
That too is a concern of mine. I always think "what if he finds nothing?....then what?"

So what happened with you in the past? Did you actually have the lap and nothing was found? Yikes :/
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1839773_tn?1330047553
So the scheduler hasn't called me yet so I called to speak with her and I get "unfortunately she's not back in the office until tuesday and she's the only one who can schedule surgeries." WTH!!! Now I'm pissed....so was I just gonna wait until tues to get a call? Smh...
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1791150_tn?1330132972
Hi there

Lol only just seen this post !!!

I can't believe how similar my pains etc are to yours!!!

same side left the pain is worse and round the back and side sometimes.

Just had my 3rd internal ultrasound and the lady said that although no cysts this time my left ovary is wrapped around the back of my uterus ??????

Very strange !!!   I still have no date for my surgery as have to wait for the "confirmed results of my scan"  Will try get it quicker though as orig they booked me an app 4 weeks later just for the results!!!

Just want it over with now but am sure I will have to have a second surgery as feels pretty bad . I am going to try and change my surgeon to an endo specialist now to save having it done twice!!!!  Have found one at my hospital no doubt he is fully booked for the next six months!!!  
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1791150_tn?1330132972
Oh meant to say have been having right side pain for three months now!!

My gyno had the cheek to say at my "chat" appointment that he didn't think I had endo as I have three kids . WHATEVER!!!!!

He said if we open you up and don't find anything  then there is nothing more we can do (B******)

He then proceeded to give me a very  very rough and painful pelvic exam even though I told him I couldn't walk for a week after my internal ultrasound due to the pain!!!  


I hate him already and am definately changing surgeons!!!


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1839773_tn?1330047553
HE'S A JERK!! Sometimes I think if we gave men a female reproductive system for 1 wk they'd be ready to return it!!

Good idea...SWITCH! Let someone else get paid for your surgery.
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Avatar_f_tn
No I have never had a lap procedure with no results as I have had many other procedures without results. I have had many tests regarding my abdominal pain that have come back negative over the years. So I fear that this to will come back negative as well.

That's annoying. Now you have to wait longer to schedule. That is not right. Surely the nurse or someone else in the office could schedule you.. I think I might be complaining about that.

As to you thebrat333. You need to find a new doctor whether you see an endo specialist or not. This guy sounds like a real a^%. And does not have the right to be treating you that way.
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Avatar_f_tn
I had left side pelvic pain for almost a year, nausea, lost almost 40 lbs, burning pain in rectal area (deep core almost) but periods were nothing special.  Multiple tests, scans and specialist, until a friend got me into a gyn that said he would do a lap in 8 days.  Turns out, IBS, moderate endo with much scarring, totally inflamed abdomen on inside, hernia and 3 cm absess (abscess) on posterior vagina.  Had a total abdominal hyst with ovaries removed 2 weeks after the lap.  It has only been 4 1/2 weeks, but there is some improvement in my overall health since the 2 surgeries.  Hang in there and try to find a surgeon you are comfortable with!
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1839773_tn?1330047553
So my ex-lap is scheduled for 11/28 :( .....as we know I was hoping for something sooner but I can be patient. I could have gotten it done sooner but it would be with a different Dr n I prefer to stay with my old guy! So until then:

Dear Pain,
Although I can always depend on you to be by my side YOU ARE NOT A FRIEND!! You cause me anguish, grief, exhaustion, anxiety, etc etc....  I will not allow this relationship to continue.

I've been seeing someone on the side, his name is Faith Hope. I know its a prissy kind of feminine name but he is anything but. I've put most of my eggs in his basket, the others are stragglers that have fallen, but one day they too will meet their clan.

So you see Pain, old buddy old pal, you will no longer consume me. Even if this laparoscopy is only the beginning of the end of our life together, YOU WILL NOT CONSUME ME!!

Signed,
DONE
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1839773_tn?1330047553
I'm so late seeing your post! My apologies!! Wow, you got that done quickly! Please keep us up to date on your progress...
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Avatar_f_tn
Hi - Im so glad that you are getting your lap done. Its not that far away. I am having mine done next week. I am so scared that will not find anything. But I am also scared that they will find something. Double edged sword I guess cause I do want to know. Oh well.... My pain is getting better or so I thought but tonight I sure hurt!
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1839773_tn?1330047553
you must be at work huh? LOL! that's how I felt I actually had a almost pain free day on Mon, then Tues it was back to the drawing board!

Will you make a thread to post your recovery?...I hope so.  What day is your lap? what have you done to prepare? (comfy clothes/fibrous foods/etc...)
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I did work last evening! As far as preparing for surgery I did buy some comfy clothes to wear home that day and I have been taking daily stool softners with a stimulant in it to kind of empty myself before the lap. I also had to file fmla just in case I need off longer than the 5 days she is giving me! But I am also in school full time ( I graduate in decemeber) so in the two days I have off before surgery I am finishing this weeks homework plus doing next weeks bc I know I won't be able to do it next week as well as getting the house cleaned and laundry caught up! Yes I will create a thread about my recovery! Lol once I'm not drugged
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Avatar_n_tn
The way you can have scar tissue-- adhesions is that endo itself can cause adhesions.

I hope all goes well and I am glad that your doctor will admit that if it is beyond his skill he is going to send to a specialist. Many ob/gyns do not. Endo is very complicated and gen ob/gyn typically does not know enough to treat it well.

achilles2
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Avatar_n_tn
You might want to look into this place:
http://www.endometriosis.co.uk/

The founder is suffer from endo. (She might be able to help you after you have surgery.

achilles2
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1791150_tn?1330132972
Hi there thanks will look it up!!  I still haven't got a date through for my surgery but when I phoned the hospital they said possibly January!!!!!

They said it is because they have to schedule two different surgeons as I am having a cystoscopy and exploratory Laparoscopy at the same time (like thats my fault not)

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1791150_tn?1330132972
Hi there

Have you had your surgery yet??????

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1791150_tn?1330132972
Hi there

only two weeks and 1 day left!!!!   Are you getting scared yet??

I know we all want it sorted out but it is really scary though too.

I am trying not to think about it or I will worry myself silly like I did when I had my hydrothermal ablation 4 years ago .   Don't like the anaesthetic  thing really .  


Good luck and sorry haven't been on here for a while forgot to follow the post duh!!!
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Avatar_n_tn
Two surgeons? My surgeon, since he is an endo specialist performed my lap and cystoscopy when I had my surgery over 4 years ago. (I even have the pics) He was the one that only diagnosed my endo he also diagnosed my I.C. He is also the one that prescribes the meds for my I.C. He preforms a cystoscopy to make sure there is no endo and to make sure he did not do any damage to the bladder if he had to remove endo or adhesions off the bladder and/or ureter.

He will also call in another surgeon if he thinks he needs to. Such as a colorectal surgeon perform a bowel resection (if needed).

I hope that you get your surgery soon,
achilles2
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1791150_tn?1330132972
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????
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Avatar_n_tn
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.
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1791150_tn?1330132972
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.



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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.

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1791150_tn?1330132972
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.  
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136956_tn?1363091289
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.
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1791150_tn?1330132972
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
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1901360_tn?1321583566
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...
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1791150_tn?1330132972
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 :(

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1901360_tn?1321583566
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!!
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1791150_tn?1330132972
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!!!
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1839773_tn?1330047553
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!
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1791150_tn?1330132972
hi there

good luck really hope they find something treatable xxxxxxx

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1839773_tn?1330047553
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...
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Avatar_n_tn
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.
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1791150_tn?1330132972
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 :)
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1927233_tn?1326673987
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.
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1925279_tn?1323571081
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
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1791150_tn?1330132972
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.
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1938345_tn?1323696292
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 (conceive) 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 (symptoms) 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
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1791150_tn?1330132972
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
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1938345_tn?1323696292
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
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1791150_tn?1330132972
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
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Avatar_f_tn
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
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