I'm new to this site and find it amazing how supportive everyone is on here. I haven't found anything this interactive (e.g.-with lots of active members encouraging and regularly speaking to one another) in the U.S. and hope you don't mind an American on the "Endometriosis UK" site. A little background: I'm 27 (as of yesterday), from VA, working on my PhD in Sociology (with a focus on gender inequality and marriage/family) at the University of California, San Diego. I'm married to a really supportive partner who, due to being diagnosed with Celiac Disease last year, now has an inkling of an idea of what it's like to be "abnormal." (He never even really got a cold before that!) But he was pretty amazing before that, which is good because I have endometriosis (diagnosed in 2009) and Crohns (diagnosed in 1996). We haven't been blessed with the child we want yet, but are lucky to have three cats that we love as much as normal people probably love their "human children." Kevin is finishing his degree in computer science so we will be moving across the country in August (to Pennsylvania) for him to start a tenure-track teaching position and for me to do my dissertation work as I'm still three years away from my doctoral degree.
Probably not much more to say about me. School is kind of my life for the time being. I thought I was used to pain having grown up with a chronic health condition but this endometriosis took me by surprise. My mother had bad endo when I was a child but I never understood how much this affects one's life until I started having severe pain in summer 2009. Oddly I'd been on continuous birth control for years before the pain started, leading the doctors to the conclusion that it couldn't be endometriosis; my mom's pain was centered around her periods only, as are many women's with the disease (which is terrible enough!), but mine is spread throughout the month. I can't say I have many "good" days but I have okay days every now and again and like to think, on some of my most positive ones, that we create our own happiness. During my worse days, I at least have my cats to cuddle with and that's enough for now.
Look forward to talking more later.
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I don't suppose there's any reason not to join this board, as long as you are aware that we have a completely different health care model over here. One that doesn't really work that well in some parts of the country. And it is not free (contrary to popular myth) we do all pay a mandatory national insurance contribution with each and every pay packet, which goes towards our supposedly free health care, but that means we are not seen as private patients. Whereas in the US it's reasonably common for women to see a gynaecologist every year for check ups, in the UK it's once or twice a lifetime if that, for most women. It's a reactive system of healthcare not a proactive system here especially regarding endo.
Waiting lists are horrendously long for seeing specialists and we are forced to spend vast lengths of time in chronic pain before attempts are made to diagnose never mind correctly treat a problem. Though emergency life threatening conditions are prioritised which is as it should be.
The benefits of the system are that when we do need prescribed medication it is heavily subsidised, but then we also don't have the accountability factor for medical personel that the US has. Suing for medical negligence or malpractice in the UK is a very rare phenomena and rather frowned upon in all but the most serious cases.
You'll also notice that there is a wide range of difference in the written language used on here compared to American English.
Celiac is Coeliac, Estrogen is Oestrogen, Fetus or Foetus, if in doubt add an 'o' before and 'e' in medical terminology. LOL
Then the meds go by different names over here too.
your Lupron is our Prostap for example.
Voltarol is Diclofenac
There are other drugs which you have and we don't, conversely we have some which are not available in the US.
The endo-resolved proboard was the best of the US endo forums I came across before this one was started in the UK
there are some very experienced ladies on that board and it was hugely helpful to me when i first got my diagnosis. I still pop back there from time to time. it's a much more organised forum set up, with sections on different treatment options, fertility, pain management, emotional wellbeing, coping with fertility, coping with family commitments and so on. Certainly worth signing up to join, even if you also stay on this forum too.
What treatments are you finding helpful to you while you get through your studies?
I did a degree in Sociology..it is a fascinating subject! I loved it. Go you doing a PhD in it!
I am happy to hear that you have a supportive partner but sorry to hear that you are both suffering health wise.
Like you I have endo symptoms spread throughout the month and don't have many "good" days either but have okay days every now and again. It is such a frustrating, emotional/physical rollercoaster. This site is a great place for support, understanding, information and great commoradary. Helps us all know we are not the only ones, we are not going mad and we are not alone.
To be honest, I wouldn't have done the PhD if I could have gotten away with being a professor without it. I just love teaching and I enjoy researching inequality (though it's a bit depressing too). Definitely seems like a great community. I wish you more okay days in the future and maybe even a few good ones now and again.
Yeh I can imagine the PhD being a lot of hard work. Sure it will be worth it so you can do more teaching and researching. Yeh inequality is a fascinating but depressing subject. Hope you are having some brighter days with the endo x
Hi there and welcome aboard. I think this sites fantastic it shows you that you are not alone in your suffering and its nice to share with others who understand what you are going through. I've suffered with endo for the last 13 years and I've had two ops due to it. I'm waiting to see a gynaecologist yet again and I'm hoping this time I will be offered a hysterectomy, I want rid once and for all. X
you are going through. Ive suffered with endo for the last 13 y
Welcome to our UK family I was born with chronic disease too but endometrosis by far is the worst thing that has ever happened to me. But since the day I vow to take control of my life is when I started finding things easy I spent days researching my problem and solution. So don't give up and don't let endo take control of your life.
Hi, welcome! I also have constant pain all month which used to ease off for a few days relief but haven't had that for a while now. I've just had a lap and still recovering and taking it all in as I've been told I need my tubes removed so children may not happen but like you I have 2 dogs that are like my children and their cuddles while I've been feeling bad keeps me going! So you may be miles away but we all feel the same pain and need suport when things are bad. This site has really helped me from feeling alone as no one around me understands but I come on here and know others can relate to how I feel.
Thanks lillyflower. What are your dogs names? I definitely feel like my cats, one in particular, know my worse days and cuddling with them keeps me going.
Thanks to all of you for your welcome and support! @Impatient--thanks for some of the clarifications re: language. Admittedly, I'll use U.S. English and cause some confusion and only ask that you ask for clarification when needed. I'll try to pay attention and catch on to some of the linguistic differences though. And it's good to have some clarification of your health care model; I actually just served as a Teaching Assistant for a Sociology of Health Care course, focused mostly on the U.S., and certainly learned much about the complexities of our own system and realize how much more complex is the international system. Perhaps we all make too many assumptions and it's good to have some of my own called into question. I think universal health care--in principle--is better than a system where those without money cannot get medical care at all, but then again, if you have money here, you don't typically have to wait for long lines. It seems like a lot of people on this site also talk about wanting hysterectomies and not being offered them in a timely enough manner; here, there are so many doctors that push them at us, wanting to make money, rather than listen to our concerns and try to figure out the right plan for us. I realized problems when my first doctor pushed fertility treatments at me, despite the fact that I wasn't ready for children, and my second doctor immediately pushed a hysterectomy despite the fact that I knew I wanted children some day (just not quite ready at 23).
As for questions about my medical history with endo, I had my first lap in October 2009 and had the endometriosis removed. I was told I had stage 1 endo but serious, stage 4 adhesions. I still find it confusing that those with the worst endo (stage 4) can have the least pain due to so much damage to their nerves while those in the earlier stages can have a little endo with a whole lot of pain! So weird and hard to explain to people; it seems like no two people at any stage have the same kinds of pain or experiences either. In another post, someone mentioned how tiring it gets to be sick every day and how you almost don't want to tell outsiders you're having a "good" day because the next one they have no sympathy that you're "sick again." Chronic illness really alluded the minds of most of the population, though we'll at least know how to manage when we're older and start having all the aches and pains that many people only feel with aging.
I did get relief from that first lap but unfortunately it only lasted about 3 months. I had a second operation with more lasering of endo in April 2010 (so only 6 months after the first!) and got about six months of pain relief from that. The only treatments I was given either time was pain medicine before surgery (darvocet, which is now off the market here) and during the week to two week's healing time and the continuation of depo provera--continuous birth control to avoid periods and--in an ideal world--growth of more endo. I had about 5 months relief and it came back again, and the doctors then said they could not continue doing laps when the relief comes for such a short amount of time. Of course, I also know that with each surgery comes even worse adhesions and I already had a ton to start. I've now been on some version of main medicine for about two years and take quite a bit of pain medicine on a daily basis; I'm starting to get some additional relief from Cymbalta and am hoping increasing that slowly may result in less pain medicine. I'm also in the process of trying to get pregnant and only now realize that the birth control, while not a solution for me, definitely helped more than I thought. Just not having the periods certainly was a plus, and without it I have all kinds of other annoyances I'd forgotten--acne, PMS, etc. Oh the joys of being a woman! Seriously, while I want to have a child, I almost am hoping it's a boy as I don't want to pass on this terrible disease to my child as my mother did to me.
Final note, this is the first community where I feel like I've really met a lot of people with regular pain all or most of the month. While I'm sorry so many of you share my experience, it is nice to finally meet people who don't understand endo as something limited to four to seven days a month. I'm not AT ALL dismissing that particular experience but here doctors seem to think that's what everyone feels and almost don't believe me when I say how much it affects all of my life. Maybe endo is understood differently in your country? Or is it just something about the self-selection of those writing on this site?
Look forward to continuing to talk with you. If you need anything from me or have further questions, please let me know. Also happy to speak to someone via email if that is preferred by anyone. Just amazing to know there are others out there like me. My biggest challenge at the moment is the increased pain coming from the uncontrolled growth during periods, which I think is worsened by fertility meds like femara; the challenge isn't the pain itself so much as how much it has worsened my ability to be productive. Obviously being in a PhD program requires an almost inhuman devotion to work, work, work, and I'm constantly hiding how little I manage to get done and ashamed that I don't have the limitless energy I had during my undergrad years when I was able to work around the clock and even graduate a year early from college. Of course, the coffee I could drink then (but which now flares my Crohns up) helped a whole lot. And part of it is getting older.
Happy Monday to you all (though not sure with the time difference if it's now Tuesday there; it's 8:40 p.m. here). Night!
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A little background: I'm 27 (as of yesterday), from VA, working on my PhD in Sociology (with a focus on gender inequality and marriage/family) at the University of California, San Diego. I'm married to a really supportive partner who, due to being diagnosed with Celiac Disease last year, now has an inkling of an idea of what it's like to be "abnormal." (He never even really got a cold before that!) But he was pretty amazing before that, which is good because I have endometriosis (diagnosed in 2009) and Crohns (diagnosed in 1996). We haven't been blessed with the child we want yet, but are lucky to have three cats that we love as much as normal people probably love their "human children." 
I've now been on some version of main medicine for about two years and take quite a bit of pain medicine on a daily basis; I'm starting to get some additional relief from Cymbalta and am hoping increasing that slowly may result in less pain medicine. I'm also in the process of trying to get pregnant and only now realize that the birth control, while not a solution for me, definitely helped more than I thought. Just not having the periods certainly was a plus, and without it I have all kinds of other annoyances I'd forgotten--acne, PMS, etc. Oh the joys of being a woman! Seriously, while I want to have a child, I almost am hoping it's a boy as I don't want to pass on this terrible disease to my child as my mother did to me. 
Awful cramps and very heavy periods.
Is my pain from endometriosis?
Has anyone found antidepressants help with the pain?
