My experience so far with endo...

[Vannos_Mogannos]

Hi Everyone

I'm new to endometriosis and want to share my experience. Apologies in advance for the long post....I just want you to know what I went through and if you're going through the same thing, stay positive! Hang in there and you will find an answer one way or another.....It all started when I was 14 when I first started getting my period. I remember being in a lot of pain...heavy bleeding, severe cramps, migraines, sometimes feverish, sometimes vomiting....Our family doctor eventually put me on the pill when I turned 16 saying that it will help with the pain and that it will 'disappear' once I start having children. I was still getting heavy bad period pain but not to the extent I was having them before taking the pill.

Fast forward a few years, I started noticing my pain getting worse and worse with each period. I've been going to various doctors in the past 5 years seeking their advice/help. Each and everyone has laughed at me to some extent saying it's all a normal part of being a women. One even judged me for starting the pill at an 'early' age and being on it for so long. Another was a bit more convincing saying that it was because my body was having a hard time trying to get rid of the large blood clots I got during my period.

This year has been the worst. About 3 months ago, I have severe abdominal pain that came out of nowhere. I went to the doctor after the second day when the pain wouldn't subside. They did an internal and external ultrasound plus tested my for a UTI. Results came back saying I had a 5mm fibroid, but nothing to worry about and everything else was normal so the doctor told me to take pain killers and sent me on my way. Having read about endo and having a friend who recently went for surgery for endo, I ask the doc if she could tell me more about it because I wanted to support my friend (I was more curious for myself and wanted to see if the symptoms I was experiencing matched what she said). The doc pretty much laughed in my face and asked who had told me about endo, as though it was a dirty secret that I wasn't meant to know about. She didn't help me and pretty much kicked me out of her office. A month later, I kept having the urgent need to pee (this had happened before, every now and again). I freaked out when I saw blood and got my partner to rush me to the doctors. The second doctor tested me again for a UTI and gave me antibiotics. Although the results came back clear, she still diagnosed me with a UTI. I then described my symptoms from the last doc, my full history with the pain I had been experiencing all these years and a few other symptoms. she told me it could be pain due to ovulation (not sure how it works but I thought you didn't ovulate when on the pill?). That was that and she sent me on my way....2 weeks later I was back with severe pain again. This time I had another urine test for STIs and other things, blood tests and another ultrasound to check my appendix. The radiologist I saw was confused to why she was scanning for my appendix and asked what my symptoms were. She said 'hmmmm...' (not sure what that meant but think she thought the doctor was checking in the wrong spot) and she decided to do a full pelvic scan of all my organs. Results came back clear. Doctor then suggested that I might have endo or it might be IBS. She told me to skip my next period and she wanted to monitor my pain for a month. At this stage I was thinking 'Finally! someone that's taking me seriously about endo!'. I come back 2 weeks later as the pain was still persistent. She then diagnosed me with IBS and gave me a bunch of supplements to take. This made me feel worse and I was even more constipated than ever! So I stopped taking them after a week and was feeling better but still in pain. A week later I had my period and was in absolute agony! I managed to take myself to the docs and unfortunately the doc I had been seeing was away. I saw her colleague and he treated me like crap. I had to go through all my symptoms again and my history. I was getting beyond frustrated at this point and was in so much agony. I was trying to keep a straight face and keep it together so he would take my symptoms seriously. He was going to book me in for another ultrasound and do more blood/urine tests. I told him I've already been through all that and to just look at my file!! He looked through and turned to me and said, look what do you want from me? A second opinion or a diagnosis? I said I wanted to know what was causing me to be in so much pain. He said that the doc I had been seeing had diagnosed me with IBS and that he was going to take a poo sample. I almost cried. I asked him how can he be sure it's IBS and not endo? I'm pretty sure he thought I was being over dramatic or a hypochondriac because I was certain he rolled his eyes at me. So I did the sample, plus a bunch of blood tests. A week later I went to see the doctor I had been seeing regularly for my results, and what do you know....the results came back clear. As I was still experiencing pain, she said she was going to refer me to a bowel specialist. I almost cried again and asked her the same question I asked the last doc. How can you be sure it's IBS and something to do with my bowels and not my uterus? I asked if it was normal to be taking time off work due to this pain, especially more than 2 days off around my period? She agreed and I had to go through all my symptoms with her again. She then agreed to refer me to a gynae. I was lucky enough to be able to see the gynae a week later. We went through all my symptoms, how long I've been had them for, all of my test results. She then did a physical examination and said there's a high possibility I have endo because things felt 'sticky/rigid' down there. But she won't know for sure without laparo. She's the first person who has (finally) taken me seriously and not made me feel like I'm making this up or exaggerating my symptoms. I'm now booked in for a deep endo scan at the end of the month as she wants to determine what type of surgeons need to be on hand (whether just her or if she needs to book a bowel surgeon too) to go in once only to diagnose and remove the endo. As you can imagine, I've been a mixed bag of emotions lately. Feeling both relieved and nervous for what's about to come. I'm not what to expect next but I'm glad I'm on the way now to hopefully ease this pain. Wish me luck!!

[Jujuhawk]

Oh wow! Firstly I wish you luck for your procedure and hopefully they will find what you suspect-endo, and they will do the best for you. My story is similar. My doctor put me on anti depressants as I would cry out of frustration every time I went to see her. Like you they never speak of ‘endo’ as if it’s a dirty secret.

By the time I managed to get a lap procedure the gynae doctor said I was inoperable, so I was left in limbo.

I then decided to research and do some holistic intervention. I completely changed my diet, taking out all dairy, caffeine, alcohol and red meat and I exercised. It took several months but the pain stopped and I began to live again.

So 4 years later I decided to have a check up and got referred to the gynae dept to be told I have a large ovarian cyst and it was to dangerous to operate but she would refer me to her colleague in England, Mr David Rowlands. He is a specialist endo consultant (didn’t know they existed). I paid privately for a consultation and he said I was an ‘enigma’ as I was all fused together but had no pain. He explained that there could be complications if he operated and to leave the cyst intact. Two years later, last week, I had the cyst removed as it had grown to 13cms and was uncomfortable. So my advice would be to keep striving for answers and to get the correct treatment, but hopefully that’s what you’re getting now. Xx

[Vannos_Mogannos in reply to Jujuhawk]

Hi Jujuhawk, thanks for your reply! Sorry to hear that you too have been experiencing the same frustrations and glad you have finally found someone that's been able to give you a clearer picture of what's going on and finally get the cyst removed. Wishing you a speedy recovery! xx

I initially asked to be referred to the same gynae my friend saw for endo. But unfortunately for me he now only takes in cancer patients, so he referred me to his colleague. She seems very interested in the topic of endo so that's one reassuring aspect to this whole journey so far. I'm just nervous with what's to come...especially with this appointment now coming up in a few days.... Just hope I'm in the right hands now

How have you found the new diet and exercise routine? Did you continue the diet after the surgery? I have considered it but the pains I have been having is leaving me so exhausted, I'm not sure if I could go through the day without caffeine to help kick start it! (probably more of a state of mind I guess) And I love dairy way to much to give it up - hehe. I have been eating a lot less red meat started taking probiotics which is apparently meant to help. Was there anything else you did to help manage the pain?

[Jujuhawk in reply to Vannos_Mogannos]

Hi. I too loved dairy but it causes inflammation so it had to go! Try changing your milk to almond, rice or hemp for a start. The odd caffeine hit is ok but mixed it up with decaf. I can’t tell you how much difference it made. So maybe try doing it slowly as painkillers aren’t good for us constantly. I did that diet years ago when I was told I was inoperable so I had no choice. I don’t stick to it now or exercise as much but I’m not in pain but I do think that’s why my cyst grew! Ask the surgeon as many questions as you can think of and if you’re not happy, find someone else. But the person sounds experienced. Google the endo diet and see. Good luck for your consultation, it’s your body so get the answers you need xx

[Vannos_Mogannos in reply to Jujuhawk]

Thanks for the tip. I will have a look into it and will definitely look into alternatives thanks