Endometriosis Stories - Page 29

Name: Kira
Email: kkingsley123@yahoo.com
Location: United States
Date: Nov 2009

Hello everyone. I'm 23 years old and I was recently told that I have endo after seeing different doctors for the last two months for lower right side stomach pain. I never experienced any previous cramping with my periods until about a year ago. I'm not sure what to do at this point. The doctor who suggested this is what I have wants to put me on Lupron for 6 months, but he suggested I get a second opinion. My second opinion told me that the lupron would only delay having a lap and that it would only help with the situation while I was still taking it. He also said that you can't even diagnose endo accuratly without doing a lap. Is it really true that you can only diagnose endo by doing a lap? I've read here in a lot from different posts that you normally have trouble getting pregnant. That hasn't been the case for me. I had my last child in May 09 and have 2 others(4/08 and 4/05). The pain that I feel spreads from the right side to the left side of my lower stomach right around where my ovaries are and it does seem to be worse during my periods. Anyone who is actually diagnosed with endo, please let me know how you were truly diagnosed and if you have taken lupron, did it actually work during and after you stopped using it? How bad were the side effects from it? If you had a lap, how long was your recovery time? Did the treatment during lap seem to be more effective than the lupron? Any answers that you can give would be greatly appreciated.


Trina
Email: bradantrina@yahoo.com
Location: United States
Date: Nov 2009

hello my name is Trina i live in Pennsylvania. i am 28 years old i found out that i had endometriosis when i was 17 years old it started off with a chocolate cyst. I was told at that time i would never have kids cause of being in stage 4 endo well i went on and on with having lap after lap my fallopian tubes flush and another lap. Well at age 20 i found out i was pregnant with my son i cried and cried cause i was so happy that i was able to get pregnant. Especially after being told i couldn't well 5 months later after having my son i got pregnant with my daughter I thanked god for it everyday that i was able to have 2 healthy children cause i was always told i couldn't. well now i'm 28 and back on the same track of all the pain during intercourse and all month long just having pain well i had just seen a Dr in Pittsburgh pa and he is willing to help me he is going to do a hysterectomy on me after all the doctors i've seen and they told me they didn't want to do a hysterectomy on me cause i was too young they didn't listen to my pain or how i was feeling. So i found the right doctor to help me with all i am going through. I done having children i am happy having 2 beautiful children. So my word of advice is don't give up i didn't and i have 2 wonderful children god has blessed me with. As well search for a doctor that will listen to you and understand what your going through that is really important i will be having my surgery on feb 4th of 2010 and i'm so grateful for it. The only thing i was told is that they are doing a full hysterectomy but there is always a chance of it coming back but i will pray that it don't. well this is my story and i hope i gave some hope to all other women dealing with this as well.. thank you all and god bless


Name: Carrie
Email: zackandcarrie@yahoo.com
Location: United States
Date: Nov 2009

I want to start by saying I feel for everyone of you who has this. My first period was when I was 13yrs old. My parents were gone on their anniversary when I started having the worst pain I'd ever felt. The babysitter thought I was trying to get out of my chores and being stubborn. She decided a good spanking would make me reconsider. I was in so much pain I couldn't feel her smacking me. My oldest brother realized something was wrong and forcibly stopped her. Two days of agonizing pain later I started my period. At first I thought I was hemorrhaging, something had burst maybe. Neither my mother, nor my grandmother got cramps. They were usually surprised by their periods and didn't know they had even started. My grandmother and aunt on my father's side had their children and then had hysterectomies because periods were a hassle. I really didn't have a reference for what I was going though. From there my periods have only gotten worse. Every month I go though a week of terrible pain and cramping. I can actually feel every egg that is released. Like a very large painful zit inside me. The mood swings are terrifying. I go from suicidal, such unbelievable anger, crying, depression, and extremely horny in a matter of hours. Then I start my period. I feel like I literally am being beaten up by a football player. I get very shocky with the pain. I can't stand my legs hurt so much, and when I do my hips slip out of their sockets. My uterus feels like someone is shredding it with a fork, and it feels as though my labia is so swollen it's going to burst. Every month I find myself begging my husband to kill me. He usually curls up beside me, holds me and cries. It makes him feel so helpless. And all I have to show for it are two maybe three days of very light bleeding. Afterwards I'm so exhausted it takes almost a week to recoup, during which I get four days of migraines. I have maybe one week out of the month that I feel human. I've been to doctors who tell me that I must be a drug addict because the pain killers don't touch it. I was given opiates and they made it sufferable. The gynecologist did ultrasounds and found that my ovaries are completely covered in cysts (they looked like grape clusters). My uterine lining was so thin they put me on pills to make it thicker which made everything worse. They told me I wasn't getting enough foreplay and that was why sex hurt so much. I was sent to a shrink, who told me I had to be bipolar. I cannot be put under anesthesia because of allergies, and thus have been spared from the seemingly meaningless, and countless surgeries, and procedures done to most of the poor souls, I've read about here. Now I only have one ovary. The other is completely calcified from scarring. I got off of birth control and had my tubes tied at 25 because chest pains and unexplained arrhythmias. I've never imagined having children. How could I ever be a decent mother to them as sick as I am. I went from a AA cup at 21 to a D cup at 30. My breasts are very tender and swollen all the time. And now at 31 I get acute pancreatitis every month with my periods. I've quit going to normal doctors, who either can't find anything and tell me I'm perfectly healthy, or tell me I need this organ removed or take this pill. All of which make it worse than before. I am now going to a naturalpath. I've been seeing her for four months and while I'm not cured, it is slowly getting better. It was she who diagnosed me with endo. Apparently, the endo swells every month and strangles my pancreas, sending me to the hospital. After years of insisting that all my health problems were related somehow to my cycle, and hearing that it was all in my head, that I was just a drama queen, I finally have an answer. She has encouraged me to start an estrogen free diet in combination with a diet suited to my blood type. For the first time ever I'm hopeful that relief is possible. I am hoping I started on this course before to much damage has been done to my pancreas, diabetes is a terrifying future. A product that really helps me is Cyclease cramp made by Boiron. If you're going through this, it's not all in your head. If your doctor doesn't listen to you, fire him, find another doctor. You shouldn't have to suffer through other people's stupidity and egos, you have enough real pain to deal with. You are not alone and there is relief possible.


Name: Elizshia Spearman
Email: elizshias@yahoo.com
Date: Nov 2009

I was diagnosed with endometriosis 3 years ago, i'v had a laparoscopy and a biopsy. I have been on the depo shot, lupron, and have taken a series of birth control pills. for the past 6 months now i have been bleeding off and on with only maybe a week or two without bleeding. I lost my insurance when i lost my job, so i am forced to go to a charity hospital and they just keep giving me different pills. I jsut recently started having really bad cramps and am still bleeding. The doctor prescribed me some ib profen but its like the pain goes away temporarily and then i have to take another pill. I don't want to become dependent on these painkillers. I am tired of waking up in pain. Nobody understands how i feel and they act like its nothing because they don't feel my pain. I have an appointment to see another doctor in 3 weeks but i don't think i can take this pain for that much longer. I just don't know what to do, I am so depressed and stressed about it, My mom says i will just have to get a hysterectomy but as i have been reading it does not get rid of the problem. I also want to have children one day but i am afraid i won't be able to. If anyone out there is reading this. Please tell me what you think i should do.


Name: AJ
Email: prettyjadestone@yahoo.com
Location: United States
Date: Dec 2009

i was diagnosed at the age of 16 with Endometriosis, and was put on 2 different pain meds, over a 6 month period of time, the pain meds didn’t help, on February 7th 2007 i was undergoing surgery for it, after the surgery i was told that it could always come back, though out the years of 07- November of 09, everything seemed to be calm, but around the beginning of the month of November, i started having severe pains shooting up my stomach and though my abdominal area, i held out on going to the ER cause of the pain due to not having insurance at that moment, when i went to the ER around the first of December, i was told that the DR, couldn’t see anything wrong with me. and they gave me Neprxin and an anti-inflammatory, neither of witch did anything for me. I’ve been so busy with things that i still have yet to call my OBGYN that did my surgery, but im wondering if you ladies think that this could be the Endometriosis coming back. if you would Email me and let me know i would greatly appreciate it.


Name: Debbie
Email: dbattygirl@aol.com
Location: United Kingdom
Date: Jan 2010

I am 33 yrs old now but have suffered with stomach pains since I was 13.In 2008 my pain became severe, left me throwing up, dehydrated and in so much pain I was taken into hospital, after 6 days in hospital I was let out and in the months that followed was sent to a gyni. Not many weeks later I went in for a Laparoscopy, where I was told I had endo multiple cysts, and well basically would never conceive again (I have 2 children) my insides were like mush and also surrounding muscles. In April 2009 I had a full Hysterectomy and was given a hrt implant in my stomach, a month later the pains were back and severe, the implant was taken out, but I had endo back again. I am now on hrt patches and still in pain and due to go back and see my consultant, they think it could be back on my bowel and intestines maybe my right kidney, I also suffer with pains down my legs now as well. My consultant wants me to see a pain management team for a while which i'm not happy about, endo can spread quickly and im worried its had 7 months to spread now without waiting any longer, although I don't like surgery surely another laparoscopy should be in order?, even if it means more surgery..............I'm so fed up and depressed 2 yrs of major pain is enough (pain feels like child birth times 10.............I don't know how much more i can take. Is anyone out there in the same boat as me???


Name: Carol Heddings
Email: carol55hedd@gmail.com
Location: United States
Date: Jan 2010

hello lady's i have not read all of your story but i too have Endometriosis ,I HAVE HAD IT NOW FOR OVER 7 YEARS.. I to got it like all of you's first pain in the belly and then from that day on my life has been hell.. I to have had my life some what come to a end .. I think I have been the lucky one , I had a Doc that stayed right by my side and he and he only help me get some what pain free .. If I could I would try to get my story out to as many Doc about what I have went though.. I think no I KNOW i can help you fine the life you went back.. WE need to get this thing called ENDOMETRIOSIS so the Doc will believe that we do live with the pain we say we have ..I know that about all of you ladys have the pain you say you have , but the Doc do not think you are in the pain you say you are in.. All they think it is that you went the pain meds am I right ladys? Please I do hope you will e-mail me about yourself and let me tell you how for over 2 years I to went though what you are going though right now ..I was bless to have a Doc to BELIEVE ME when I would say I have pain that will not go away and is getting worse.. You mite think when I SAY i have a pain pump in my belly is nuts but it is for real, and it has saved my life .. BECAUSE IF i did not have this I WOULD BE DEAD I WOULD HAVE TOOK MY LIFE JUST TO END MY PAIN..Please e-mail me I know I CAN HELP YOU .. P.S I KNOW GOD IS HAVING ME DO THIS , SO OTHERS WILL NOT HAVE TO LVE LIKE THIS NO MORE. GOD BLESS ALL AND I WILL PRAY FOR YOU ALL CAROL- FROM DANVILLE PA ..


Name: Julie Marshall
Email: juliemarshallpk3@hotmail.co.uk
Location: United Kingdom
Date: Jan 2010

I can relate to most of these messages on here. I was told i had endo 3 years ago after suffering from painful and prolonged periods, and pelvic pain. I had my first lap shortly after to burn away lining of my womb...great no periods for a while. Then a year later pain returned and felt so unwell. Again had lap and found i had kissing ovaries, large cysts, and my bowel and bladder all fused together. Again was fine until 4 months later when again pain returned. I then had a complete hysterectomy as again all organs had fused together and cysts returned. I was put on hrt patches, and have some doubts that this is in fact cause of my adhesions growing? even though my consultant says it isn’t .Anyway you guessed it....5 months after pain again. this time a massive adhesion had stuck itself to my appendix and pulled it around and attached itself to the bowel.8 weeks on i have been poorly with nausea and severe right side pain...appendix again i think? So back at the doctors for me. I think something should be done to make people more aware of endometriosis. Its so hard trying to understand why me? when will it all end? how long can i cope with all the never ending treatment/ops..etc. Good luck to you all...lets hope we all get better soon. Take care Julie


Name: Jess Ward
Email: missyj2359@yahoo.co.uk
Location: United Kingdom
Date: Jan 2010

Im a 27 year old who has suffered from endometriosis since I was 19. The first sign that anything was wrong was irregular periods, constant bleeding and pain on intercourse. I was diagnosed pain killers, antibiotics, I under took endless numbers of internals, swobs and smears I was then at work one day when I was given a petition to sign in relation to Endometriosis. It wasn’t until reading the information provided that I realised that this was what I was suffering from. I then took this information to my Dr and asked to be referred to Gynea for further investigations. After my 1st appointment with them it was agreed that this is what I had. A few weeks later I was rushed in for emergency laparoscopy, 3 month later it returned. This has then been the story ever since, I have had a total of 5 laparoscopies, my nerve endings have been severed. After the 4th laparoscopy I was given an injection to send my body in to artificial menopause, this didn’t stop the pain and I was then informed that the endo hadn’t returned and that they were discharging me and referring me to a pain specialist. Following my gut instinct and knowing my body better than any Dr I demanded a further laparoscopy. It seemed that I was right to do so, after operation 5 they found my left ovary attached to my pelvic wall and that the endometriosis had returned, as predicted. It was then that they refused to perform any more operations I then asked for a referral to another hosp, who have also refused to operate any more. Instead they informed me to consider getting pregnant as they will be performing hysterectomy! 3 years later I have a little boy, the endometriosis has returned with vengeance and I am now waiting for my appointment in order to request a hysterectomy Through research I have discovered that laparoscopies don’t allow access to the pelvis area of the body. Each Dr or consultant I have seen have all mentioned that it may be pelvic inflammatory disorder, until further investigation. My theory is that on each lap my pelvis wasn’t looked at, and the endo has been left there to grow. This would explain why people seem concerned about my pelvis If this is right, what condition is my pelvis in??? I am experiencing problems with my bowls, bladder, life my sex isn’t very active, and life is full a daily occurrence of pain and discomfort My advice to any individual who is suffering, make sure you do your re-search and you tell them what you want to happen, how you want this to be treated and what you feel is best for you.


Name: Ann-marie Wallington
Email: amsnmike@tiscali.co.uk
Location: United Kingdom
Date: Jan 2010

hi, im 25 years old and have been suffering from excruciating "period pain” since the age of about 14 it started pretty much straight away i recall sitting in classes at school in unbearable pain thinking this isn’t normal! i kept telling friends and family who said its normal to get cramps i would often get such bad pain i would vomit or pass out i went to see my gp and explained my symptoms all i was told was that its normal and ill grow out of it in a few years and to have hot baths, hot water bottles and continue with standard analgesia. I was very disheartened and fed up of all the pain, i dreaded the next bleed weeks before it was due. after a few cycles i was having intense stabbing pains in my left side which would travel all round my abdomen, back and between my legs i had the most excruciating cramps i was doubled over in agony and just wanted to die but still no one would listen so i kept going back to see other gps to get some answers, I was told the contraceptive pill loestrin 20 should help so i stayed on it for sometime and ran three packs together at a time so i would get regularity and bleed less often it helped initially in the respect that the pain wasn’t as severe but it was there most days although i didn’t think about it too much as everyone kept saying its growing pains,i went back to the same gp i saw last time who told me i should try a higher dose so i was commenced on loestrin 30 this seemed to make me feel awful, headaches, nausea etc however i gave it a few months to work then went back to my gp again, to cut a very long story short i was commenced on mefenamic acid which were horrific the nausea and pain etc was worse than ever so i was tried on 2 different types of the pill after still in horrific pain when i got to about 16 id had enough and felt very low i couldn’t do normal things my friends were doing as i never knew when the pain would strike so i hardly went out and for months became a recluse on top of all this i was born with double cleft lip and palate and virtually every year had facial surgery which made it even worse to say the least! i went to my gp again and demanded help in the end she gave in as she was "fed up of seeing me" and referred me to a gynaecologist i was menstruating at the time of the appointment and was mortified that i had to have an internal exam all the while crying and in excruciating pain he said he would book me in for a diagnostic lap but the results were clear! i tried to push it to the back of my mind and started taking the pill 4 packs in a row the pain lessened but was still there i was taking too many painkillers just to get through the day.i started college at 17 but was off a lot due to the unbearable pain however i did well with my grades but i knew something still wasnt right i was on my way into a lecture one day and pain ripped through me like a knife i was screaming and doubled up in pain i stumbled to the loo and was bleeding really heavily and grabbing onto anything i could to stop me passing out and falling a friend came in and said i need to see someone i thought i was going to die i rung my(then)boyfriend and told him I’m going to go to a & e I rung my dad who wasn’t able to pick me up so i got on the next bus and cried in pain the whole way home but thought it would ease off like usual in a few days or so that night i ended up in a & e i passed out at home and bleeding heavily etc they thought id had a miscarriage and sent me home after a few tests i broke up with my partner he couldn’t understand or put up with me when i was screaming in pain, I was devastated. i started another college course but quit 5 months or so in as the pain was too unbearable and grades were slipping. it took a while to get work but was relieved in a way that i wouldn’t have to worry if i was in pain as id be at home, I got a part time job as an xmas temp where i met my current partner i pushed him away as i didn’t want to make him suffer as the mood swings were awful I’d lash out for no reason but he understood and stayed. Fast forward a year or so started a new job as a carer in a hospital which i loved the pain wasn’t any better but more manageable as i had a bleed every 12 weeks or so and was able to plan time off in advance, I started getting pain during and after intercourse which was awful and got re-deployed to another ward the symptoms got worse after stopping the pill and depot injection so went to gp as pain unbearable and still wasn’t pregnant a year later even though i was told its normal, I had a couple of days off work nearly every month in unbearable pain and had diarrhoea ,sickness etc i had to endure several meetings at work often with 2 or more people questioning me at the same time which made me feel intimidated and like they didn’t believe me. I co-operated with everything they asked me to do, going to several occupational health appointments (even on my days off, in another hospital)i kept going to my gp ,still no help so i moved to another gp surgery hoping to get help still after loads of tearful appointments i was told its probably just dysmennorea (sorry dont know how to spell it)i was at my wits end i had sick notes but was still being sent to these awful sickness absence meetings which were getting more serious by the month but still no answers i did research online and matched my symptoms with endo and asked my new gp if i possibly had it ?he said it could be and i begged for investigations after 2 trans-vaginal scans by different people i was told they’re clear i couldn’t accept this and was put on list for laparoscopy i was being threatened with the sack at work and was desperate for help on 12th nov 09 was told have endo and may be difficult to conceive(been trying nearly 3 yrs now)no support was offered at any point and continued to have 2 days or so off work per month in agony, consultant wrote letter to employer to get them off my back but didn’t work i went to stage 3 sickness meeting yesterday 28/1/10 they told me after an hour or so that I’m sacked on grounds of ill health ,i feel hurt, and depressed i found out day before my partner is in debt and didn’t want to tell me as I’ve been so ill and stressed and now i may lose my home and i have no job i don’t know what I’m entitled to as i don’t even know if I’m classed as unemployable for the time being until i see my consultant in march as he’s going to discuss medication or surgery, i feel so alone and like I’m in a black hole that I’ll never get out of. If anyone could help me I’d be so grateful as i don’t know what to do next this awful condition has ruined my life and i feel for anyone who has to go through this!! Xx


Endometriosis Stories - Page 30


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