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chronic pelvic pain and endometriosis

Oct 25, 2014 - 4 comments


hi this is my story for those that can maybe relate to what i had to deal with for 8 years..

so i am going to go back in time to were all my health issues exculated over the years. here we go!

when i was 11 years old,  i experienced my first menstrual cycle of becoming a woman. but the pain i would feel from my periods were very painful. it was so painful i had to miss school a lot. and the heavy bleeding was disturbing to me at the time. i would have to use an over night pad during the day because it was so heavy within an hour or so i would have to change my pad because the bleeding would leak through the pad and stain my clothes while at school. it was so embarrassing. and i would be bedridden for a couple days because of the horrible cramps. but at that time i only had those issue during my periods. and after it was over i was able to do my daily activities as a little kid. as i got older the severe cramps only got worse every month. and i would either have to stay  home from school or if i started my period at school i would have to call out. i can't get out of bed or function when i had my period every month. my parents would always tell me its normal. girls feel cramps all the time. but the cramps i felt like sharp, burning pain only in the pelvic area. and it would feel like i was being punched a million times by someone with huge hands. and those kind of feel would get worse as i got older and the same routine would happend as mentioned up top. and only hear more lectures on how its "normal", "you can't keep missing school", "your mother would get painful periods too". "suck it up, its just a bad period". until one day at age 17, moving up the timeline now. i was having the worse cramps ever! to the point i felt really sick to my stomach and i was sweating really bad too. my dad wanted me come give him a good night outside my bedroom door. and the pain was so bad i hesitated to move out of my bed because of the intense cramps. each time i tried to out of bed made the nausea worse. i slowly got out bed and walked slowly to my dad. and half way there i started to feel really dizzy and weak. and the nausea and cramps got so bad i had to lean against the wall. i couldn't move and i didn't want my dad to come near me at all. so he picked me up and carried me to the car to go the ER. when i got there they do the use questions. how old are you? are you pregnant? do you drink or smoke? when i answered there questioned and told i am not pregnant i never had sex before. and she laughed and said that's what they all say. but surely the pregnancy test came back negative. so the doctor did a blood test which came back normal except my wbc was high. he wanted to do a CT scan and he found that i had a lot of cysts on both my ovaries and suggested that i see a obgyn to get bcp. i got discharged and got prescribed 800 mg ifruproven and to not go back to school for a week. i didn't see an obygn yet because my dads insurance expired and i couldn't get my own i was in 10th grade and no job. a year later at age 18, i met a guy and we dated. it went well until i started to experience new symtopms. i had sex for the first time with my ex at 18. no lie. and the first time hurt really bad we had to stop half way. and i thougt to myself of course its going to hurt the first time! duh! but it continued to hurt really bad the more we had sex. and he was starting to get discouraged. thinking it was his fault. but it wasn't something was wrong inside me and i didn't know what was going on. then more new symptoms started to happend. i noticed that i wouldn't have a bowel movement for a couple weeks to a month and when i did defecated. it was super painful! it continued to get worse and worse.when i had my period i would get really bad diarrhea and intestinal pain. then i was starting to loose weight fast because i would be so constipated that eating would make the pain worse. and i would feel full real quick from just taking a few bites of food. the last time they weighed me at the ER i was 120 pounds. when those symptoms got worse i went down to being 92 pounds. my parents were noticing the wrapped weight loss too and scheduled any appointment with a GI doctor. he did a lot of blood tests on me for food allergies/sensitivities and celiacs disease. which came back normal. so he refered me to get scoped at both end to check for crohns disease and any inflammation in the bowels. the results came back normal. he then diganosed me with ibs and gave me meds to help the pain and help me poop. and told me what to eat and not to eat. which the meds didn't help and eating a lot of fiber didn't help and made the pain worse. and i continued to be underweight. it was getting frustrated that i was starting to get depressed. because nothing was giving me relief. sex was still painful and my ex would get more upset and distant from me. my dad was turning on me thinking that i was causing my pain and that i was starving my self because the test result would come back normal.and that really made my depression worse.having for own father doubt you like hurts. and my periods continued to get worse as well. i just dealt with the pain and continued to be miserable. and the i noticed i was having chest pain/heart burn. i brushed it off and kept an eye on it until one night the heart burn got really bad. i was literally screaming in pain. it felt like i was on fire. so my dad took me back to the ER and the doctor gave something that looked like bepto bismol but it was green and smelled like peppermints. he said if this cools down your esophgas then you have GERD. and i drank it and oh my god it made everything cool down. so then i was diganosed with GERD. my dad told me he was diganosed with GERD the same age as me. i was like, thanks for telling me that now. i got discharged and the doctor perscribed me a round of nexium pills to i was taking meds for my ibs and now for GERD. but i was still having painful periods. i was having pain a week before, during, and after at this point. everything hurt. and i was still struggling to put on weight. i was a mess both pyschically and emotionally. everyone i knew didn't believe there was anything wrong. because everything came back normal. my mom at this point was getting fed up of me not getting answers to why i was in constant pain and be in worse pain during my periods.i was scheduled by my GI doctor to see an obgyn. so then i got put on the normal 28 day bcp. and it didn't help the cramps or the heavy bleeding. went back and was put on the depo provera shot and my mom asked the doctor what could be causing me to have severe cramps and the weight loss. the doctor told my mom that i was aneroxic and bulemic and that i should see a pyschatrist. after that being said i decided to not go back to that obygn after i stopped taking the depo provera shot because that wasn't helping the pain either. at that point in my life i was loosing hope. i was once again with no definite answer to my extreme period pain along with ibs and the random weight loss. i wasn't doing this to myself. but my family would never believe that my pain was that bad.that i was looking for attention. i continued to miss school days on my periods. my ex was being more mean and distant from me. i did have suicide thoughts at that point. because i was very scared. and everyone accused me of doing it to myself. i went to my GP and told him about my visit at the obgyn and how the bcp were not helping my pain. he referred my to a different obgyn. which was so helpful. i told her everything. and with a soft angel voice she told me, i believe you are in pain and is tired of it. i want to help you. i started to cry. i was like finally. she asked about my cycles and my sex life and i brought up endometriosis. she said it does sound a lot like endo but she wanted to do an ultra sound first and test me for HPV which was negative. it was a transvaginal and those hurt a lot to were i cry..and the ressults showed that i have one tiny cyst on my left ovary and that my uterus was tilted forward a bit over my bladder. she then suggested that i go back on bcp to see if helped relieve the symptoms of endometriosis and if didn't help with in three months that she was going to do a laparoscopy to check for endo. and once again the bcp didn't help at all..when three months arrived, my dads insurance expired and could no longer take to bcp and see my doctor. another delay and another miserable life of ignoring the pain. and kept going back to the full cycle of missing school, during my periods, have no relief after my period, have painful bowel movements and nausea constantly. sex was still painful. i did graduate high school because i pushed through the pain. i kept living life but at the same time i was miserable and depressed. and all my friends didn't see that. because i hid it so well until i ended missing a couple days of school and my friends would ask if i was ok. and i would lie and say i was just sick. and not mention the reason was because i was on my period. i didn't want anyone to know. i was embarrassed and i didn't want to hear from them telling its normal. this didn't feel normal and i knew that but at the same time i just didn't freaking know. plus my three year relationship with my ex was getting worse. he was cheating on me. and was being verbally abusive to me. so i finally grew balls to end the relationship. years went by where i continued to push through the pain and try to not let it control me. i go hired at my first job and went to college for a year. then i stopped going to college because i couldn't get finacial aid. so i continued to work, continued to ignore the pain. and try to live.after breaking up with my ex and meeting new people. i slowly started to gain weight again. and my ibs and gerd pain subsided. but my period pain was still unbearable.years went by of still being in constant pain. then in 2011 i moved out of my dads and moved in with my current boyfriend. because my job was cutting hours bad and i needed money to pay bills so got transferred to a different store where my current boyfriend lives.things started to settle down the pain was getting better and i was gaining more weight. which made me happy. but my period pain got so made i ended up missing work for a week and for the ER doctor to not do anything but give me crappy pain meds. it continued to be like this for another two years. i still had no health insurance. i try my best to not call out of work and just ignored the pain again. one day i noticed i was having really bad low back pain and there was a bump there. my boyfriend and i, went to a chiropractor close by our apartment. and the doctor was nice and the place was very welcoming. he did an x-ray on me and told me afterwards that i have a spine disorder called lordosis. that is where the low lumbar curves inward making it look like i have a duck butt and that i have arthritis there too. he scheduled me to come in for rounds of alignment and messages. which it kind of helped but he could get my lower back to align.. so i tried to do other methods to help correct the curve in my spine. and it helped for awhile. but the pain got worse. to where i was getting tired all the time and couldn't do my intense workouts anymore. and i was still having painful periods the where i started to notice i was passing huge clots bigger than a quarter with more painful cramps. i once again couldn't go to the chirporactor because i couldn't afford it. so i once again dealt with the pain. it got so bad to where i was having a hard time to urinate. it felt like i was very full and there was pressure on my bladder, when i peed it didn't burn i just couldn't pee a lot. the pain there got really bad i went to plan parenthood to see what was going on. the doctor did a pregnancy test and again negative. she tested my for uti. which was negative also. so she suggested me to take bcp again and i tried to tell her bcp don't help at. but she kept insisting and just so she shuts up i agreed to taking the pills. and she perscribed me antibiotic for symptoms of a uti which i didn't have at all! when my period came from being on the new bcp, again it didn't help the cramps or the bleeding. and i was still passing those huge clots.i stopped taking the pills and just ignored it. and dealt with the pelvic pain and fatigue. in 2013, my co worker noticed that i was not looking well and told me about a program called choices. its kind of insurance for low income workers or unemployed people. once i applied for it and got approved. i immediately started making phone calls..because i can't handle this pain and the fatigue and mood swings that come with it.. i am grateful my boyfriend is so patient and supportive when i have a break down. i love him to death for that! i had my first appointment with my GP. i told him my histroy and how my periods were painful and irregular. he was nice to listening my symptoms and ordered me to get blood work done to check my hormones and get an ultrasound done. my thyroid hormone was normal and my prolactin level was a little bit high. and my ultrasound showed that i had an 8 mm cyst on my left ovary. so he wrote me a referral to see an obgyn and to get an MRI done to check my pituitary gland. in the mean time he prescribed me meloxicam for pain. i met my new obgyn. she was nice and listened to all my symptoms with my periods with no judgement or stating it was normal. she then proceed to do a pelvic exam on me. which is always painful. she told me my pelvic floor was very tight and that it could be endometriosis. so she suggested i go back on hormones again and do PT. she prescribed me northindrone, which is to treat for mild endometriosis. she told to take it for 6 months and if that and PT doesn't help the pain. she was going to schedule me to meet the surgeon to do surgery to see if it was endometriosis causing my i tried it out and i didn't notice any change i was still in pain. then i went to get MRI done. the results for that, my pitutary gland is fine but they managed to find a 1 cm cyst on my pineal gland and my GP thats nothing to worry about. so i continued the pills and i am still in pain. my boyfriend  in june went to colorado to take summer classes and visit his sister. so i was by myself. then the pain started to get worse. i noticed i would having a little bleeding and spotting. then i would get intense cramps and i started to pass pink fleshy tissue on my pad. i ended up missing a week of work again because the pain was so bad. i tried to go the ER and they didn't do anything and told me to see my doctor. and so i tried to get an appointment but the nurse on the phone would tell me to go the ER. finally they scheduled me to see my surgeon in a week. when i met the surgeon. he seemed like he was having a bad day and didn't want to be at work. because he was being really rude. i told him about the pain, the meds im taking, and the tissue stuff. he thought it was a miscarriage. which i told him it wasn't because i went to the ER to get a pregnancy test which was negative. i didn't have sex for two months since my boyfriend was away. and he just laughed at me. so i got up and stormed out the office and slammed the door behind me. and that got me to being under their care the referred me to another obgyn across town. i met up with the new obgyn and she heard my situation. she suggested to keep taking the pills and go to PT. i did what she told me to do and it helped the pain. the next time i came in to see her i told her the pain has subsided. she was very happy about that and told me since the pills and PT helped then it was probably endometriosis and surgery is not required since you're feeling better. so i kept taking the pills for a couple months longer. then i noticed i was starting to get really bad headaches. so i just ignored and continues living my life. but the headaches didn't go away. then i was noticing rashes on my face. i was freaking out at that point and scheduled to see my obgyn. i told her about the headaches and the rashes and the severe back pain and chest pain and asked her if its from the hormones. she told it couldn't have been because i've been on it for 8 months. so i decided to stop taking to pills for a couple of weeks and the rash, headache, and chest pain went away. but i was having really bad cramps even though i didn't have a period yet. i went back to my doctor. i told her when i stopped taking the pills the headaches, rash, and chest pain went away. she still didn't think it was the pills so she offered me to try 10mg provera tablet. i asked her about doing surgery and she refused and kept saying its not going to help. and that there is no i tried provera. and i didn't have any headaches,rashes, or chest pain but i had really bad nausea. i tried taking it with food and the nausea didn't go away. so i just stopped taking the pills and i couldn't go back to my obgyn because my insurance exspired. once i stopped taking the pills the nausea went away. but when my period came.. it was really painful still and i was still passing huge clot and fleshy tissue. i continued to deal with the pain once again! and tried to take herbal supplements and avoid certain foods.which it kind of helped. but then my periods were starting to be a week late and be more painful. i decided to go see my obgyn one more time. it was a 100 dollars out of pocket without insurance for the visit. i told her i am still in pain, my periods have been a week late, and  i am still passing tissue. she suggested pills again i said no!. then she did ultrasound assuming i had a ruptured cyst. which the ultrasound showed i have no cysts on my ovaries, i have a retroverted uterus, meaning its tilted backwards, and she found a little bit of fluid behind my uterus. she said she couldn't tell if it was from a ruptured cyst or from after ovulation.i mentioned if we can do surgery to check for endo.i told her i did ever test possible even tests for stis which all came back normal. my periods are still painful afterwards. i am tired all the time.. bcp don't help. i need the surgery to know whats causing my pain. once agian she was hestiant about doing it because she told me endometriosis doesn't cause chronic pelvic(which is not true) and that it can come back. and though she seemed uncomfrotable in doing the surgery because she isn't that good in doing it.but she agreed to did when i get insurance. after hearing what she said, i am having second thoughts. my step-mom gave me a book called "Stop Pelvic Pain and Endometriosis" by andrew s.cook who is md surgeon for endometriosis. i read his book and i now understand why my doctor kept pushing off surgery for me. and that i need to find a new doctor. and that's what i'll do. in the book, he said the reason why the endometriosis comes back, is because your surgeon did not remove the lesion correctly and get rid of all the endometriosis. if it is removed correctly the chances of it coming back wouldn't be for awhile, hence can help me get pregnant later instead of after recovery. maybe you can get the book and read it and see what you think.i am getting closer to a diagnosis i am hoping there is no more delay. in the meantime, my step-mom also gave me an herbal supplement drops called endo-x to see if it that can help the pain. it has no side effects so i am pretty hopeful that it might help. if anyone who has read through my story and you are concerned that you have endometriosis and have had similar issues as me. see a doctor. it's not normal to miss school, or work during your period. it is not normal to have pain during and after sex. i hope my story inspired you to speak up and get second opinions.

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Avatar universal
by TerryLinn, Mar 01, 2015
My daughter has a condition called "Dysmenorrhea". It started when she started menustration at 13. She is now 28. It took us 3 years to finally find a Dr. who knew what it was right away. She gets tremendous cramps, sweating, dizziness, fast heart beat, passes out, and bleeds a lot and passes quarter size or larger blood clots. We had taken her to different Gynecologist's, ER Dr.'s, GP's, etc. The Dr. who told us what it was stated it usually goes away after giving birth. He also said to start taking a NSAID (naproxen, etc.) a week before your cycle to block the prostaglandins that cause the inflammation. I am sorry you have been going through this for so long. I think a lot of women are misunderstood when it comes to their issues. Sad but true. Google "Dysmenorrhea" and read on it. I pray you can find a resolution---your suffering is horrible. God bless.

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by heatherbear25, Mar 01, 2015
i don't have dysmenorrhea, just went to see my obgyn friday and she said i have pcos and i am getting surgery for endometriosis. i have chronic pain and painful period like cramps all month long until my next cycle aka thats endometriosis. nothing helped me not even hormones or psychical therapy. maybe you need to look up endometriosis and pcos and better understand it.

Avatar universal
by pain_takes_everything, Mar 14, 2015
I have 13 yrs of chronic pelvic pain ,  I was diagnosed with endometriosis, and was given a hysterectomy at 21 due to unabated pain and my request .   I am now 33 and still have unabated and extreme chronic pelvic pain.

I have had 5 laparoscopy , my appendix and my galbalatter removed as well.

Every laparoscopic surgery has found adhesions, endo, infection, scar tissue and hestosites.

I have seen over 30 doctors in 7 states , I have tried acupuncture, physical therapy for the pelvic area ( this is done through the vagina) , lidocaine injections into the pelvic floor.,(This is a 2 foot needle injected through your buttocks into the pelvic floor) I have done trigger point release internally (in the vagina), not to mention multiple forms of coping with pain, yoga, and narcotic pain meds .  

  In the last 13 yrs I have had 6 months of being pain free and maybe 3 yrs of pain being tolerable enough to function well enough to build a life and enjoy it.    

I have been told that it's in my head .
or that I am a drug seeker/addict .
I have been told there is nothing they can do .

I am at  my wits end , and terrified I am going to end up as a drug addict because no one can help me... that there lack of belief in me or there belief that I am an addict and not treating my pain will make me turn to street drugs just to escape from the pain .  

I am so scared they are going to make me into what they think I am .......  this is hell

Avatar universal
by JoJodreaming, Apr 16, 2015
I am so sorry to hear that you've been going through idiopathic pain for so long pain_takes_everything.  I have been going through the same thine ie: idiopathic chronic pelvic pain nearly 6 years.  It took lots of tests, path, MRI's, U/S's external and internal, colonoscopies, gascoscopies etc. First off all 3 faecal tests showed blleding in my bowel to which my Dr at the time was shocked as I'd been her only patient tat all 3 had come back with faecal blood. so had colonoscopy and Gastro Dr came out and stated I had 3 average and 1 massive polyp he'd removed...I thought great they'd found the reason for my pain but alas polyps don't cause pain. So next was my GyObn who couldn't find anything wrong so booked me for a hysterectomy.  Meantime things changed on the home front and I found myself moving house 120 km away. I got my new Dr to refer me to one of the city's most prestigious hospitals to ee a General Surgeon who was lovely and wanted to do a laproscopy to see what was going on but rang a collegue, a Professor Obgyn and cancer specialist to do one too alongside him, so I had an op day/time before I left his room. Had this done, General Surgeon took out appendix as a precaution (path later found it ok) but ObGyn found I was full of endometriosis which he lasered all out. I wasn't even out of hospital and was still in shocking pain so went back to see him and within 3 months was back in for another look...and yes was inundated again with endometriois. So time to have a total hysterectomy and oopherectomy as hormones from ovarys make endo.  Again pain now back, sent me to pain specialist who thought I had ACNES, abdominal cutaneous nerve syndrome and 2 minor and 3 major op's later have a stimulator in. Found it only helps with lower pain at end of it's approx.6 hourly cycle. As time progressed pain became more severe and 24/7 but still cyclic. Blood tests did show Adrenal fatigue but not Addisons disease. Morphine, Lyrica and a plethara other med's are pretty useless. So I am googling auto-immune and endocrine diseases, probems to try and see if I can locate what else it may be as my wonderful 2 Dr's have pretty much come to an end of tests and ideas as so many symptoms are found in Addisons, Fibromyalfia, Crohn etc.. I too get severly distraught and depressed a great deal over having not living just existing and so horribly and painfully at that but have had a devastating life bringing about painful, worrisome and devastating episodes happening one after another since 1989 that has taken a terrible toll on my mental and now physical health. I hope what I had been tested for or surgery on or my suggestions about other syndromes may help you and anyone else going through these most utterley painful episodes that have me bedridden the last 1 1/2  help you.  Wishing you healing of mind, spirit and body  

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