Endometriosis Stories - Page 29


Kira
United States
Nov 2009
 

Hello everyone. I'm 23 years old and I was recently told that I have endometriosis 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 laparoscopy and that it would only help with the situation while I was still taking it. He also said that you can't even diagnose endometriosis accurately without doing a laparoscopy. Is it really true that you can only diagnose endometriosis by doing a laparoscopy?

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. 


Trina
United States 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 endometriosis. Well I went on and on with having laparoscopy after laparoscopy, my fallopian tubes flush and another laparoscopy.

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. 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.

I'm now 28 and back on the same track of all the pain during intercourse and all month long just having pain. 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. I am 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.

Search for a doctor that will listen to you and understand what you are 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. 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 


Carrie
United States
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 pains 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.

My oldest brother realized something was wrong and forcibly stopped her. Two days of agony later I started my period. At first I thought I was haemorrhaging, 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 cramping. I can actually feel every egg that is released. 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 shaky 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 medications don't touch it. I was given opiates and they made it sufferable. The gynaecologist 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 anaesthesia 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 naturopath. 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 endometriosis. Apparently, the endometriosis 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. 


Elizshia Spearman
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 just recently started having really bad cramps and am still bleeding. The doctor prescribed me some ibuprofen but its like the problem goes away temporarily and then I have to take another pill. I don't want to become dependent on these medications. I am tired of waking up in pain.

I have an appointment to see another doctor in 3 weeks but I don't think I can take this agony 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. 


AJ
United States
Dec 2009


I was diagnosed at the age of 16 with Endometriosis, and was put on 2 different meds, over a 6 month period of time, the medication didn’t help. On February 7th 2007 I was undergoing surgery to treat my endometriosis. 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 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 which did anything for me. I’ve been so busy with things that I still have yet to call my OBGYN that did my surgery.


Debbie
United Kingdom
Jan 2010
 

I am 33 yrs old now but have suffered with stomach pains since I was 13. In 2008 the problem became severe, left me throwing up, dehydrated. 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 endometriosis, multiple cysts, and basically told I 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 an hrt implant in my stomach. A month later the symptoms were back and severe, the implant was taken out, but I had endometriosis 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 on my bowel and intestines, maybe my right kidney. I also suffer with aches 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.

Endometriosis can spread quickly and I'm 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. 


Julie Marshall
United Kingdom
Jan 2010
 

I can relate to most of these messages on here. I was told i had endometriosis 3 years ago after suffering from painful and prolonged periods. I had my first laparoscopy shortly after to burn away lining of my womb...great no periods for a while. Then a year later the problems returned and felt so unwell.

Again had laparoscopy 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. 


Jess Ward
United Kingdom
Jan 2010
 

Im a 27 year old who have 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 prescribed pain killers, antibiotics. I undertook 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 into artificial menopause, this didn’t stop the symptoms and I was then informed that the endometriosis 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 hospital, 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 laparoscopy my pelvis wasn’t looked at, and the endometriosis 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 bowels, bladder, my sex life isn’t very active, and life is full a daily occurrence of discomfort. My advice to any individual who is suffering, make sure you do your research and you tell them what you want to happen, how you want this to be treated and what you feel is best for you. 


Ann-marie Wallington
United Kingdom
Jan 2010
 

Hi, I'm 25 years old and have been suffering from excruciating cramps since the age of about 14, After a few cycles I was having intense stabbing sensations 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 gp's 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. 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 was horrific. The nausea was worse than ever so I was tried on 2 different types of the pill after still in great agony. when i got to about 16 I'd 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. For months I 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 was eventually referred 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 laparoscopy, but the results were clear I had endometriosis!

I once passed out at home and bleeding heavily etc., they thought I'd 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 agony, I was devastated.

Fast forward a year or so, started a new job as a carer in a hospital which I loved. The symptoms were not 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 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.

After loads of tearful appointments I was told its probably just dysmennorea. 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 endometriosis 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 a list for laparoscopy. I was being threatened with the sack at work and was desperate for help. On 12th nov 09 was told I have endometriosis and may be find it 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.

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. 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. 


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