Does anyone with endometriosis have daily pain not just painful periods?

Hi Mutley, ive just read your discussion and wanted to tell you you are not alone. I have exactly the same pains and am also getting nowhere. My stomach pains are often worst than the endo pain, like a burning in the right quadrant of my abdomen, both top and bottom.

My gastro dr says its endo related and gynae dr says its gastro and im fed up going round in circles.

Ive had laparoscopy, CT scan, ulta sound, colonoscopy, sigmoidoscopy and endoscopy. Apart from the endo found in laparoscopy on ovaries, bowel and both ureters the only thing found is a hiatus hernia and slight gastritis which i am on Omeprazole and Ranitidine for horrendous acid reflux. I am getting to the end of my tether and dont know where to turn next.

I originally had Prostap injections a year ago and in my opinion it was them that started the stomach problems, but dont want to scare you off as everyone is different.

I am at the moment on a drug trial for the endo then have an op on 21st Dec to remove right ovary, and endo off bowel and both ureters. Im just praying this will ease some of the stomach pain aswell as the endo pain but im not too optimistic.

I hope you soon get answers as i know how hard everydya is for you.

Let me know how things are going x

a) Yes, many women do.  I know of several personally.

b) never heard of  it.

hi my name is claire i am 35 have endo myself but my consultant doesnt actually know where about, he has ordered an emergency scan then i have to go back in 6 weeks, my previous consultant told me that i had polycystic ovaries and put me on prostap for 6 months with HRT, i was in constant pain then i started the injections, after about a month or so my pain went, i was so happy, then i had to have a 6 month break from the injections, same thing again after about a month or so my pain came back, 6 monts went by of being in constant pain, i was then allowed another 6 month course of injections, my pain went after about a month, same thing again, i was pain free till about a month after i finished the injections, i was then in constant pain, felt like i was going round in a vicious circle until this wonderful consultant MR Mitchell from essex seen me in my local hospital in liverpool and told me that i need a oopherectomy ( cant spell ) i was so made up when he told me this last week but he then told me that i wouldnt be seeing him anymore, i was upset and told him i didnt like the other gynaecologist, he fully understood and referred me to his partner who works at my local hospital, oh i forgot to say that i had a total hysterectomy in may 2010 but left ovaries in, i am now on oxinorm for the pain it does usually work but when i am really bad it doesnt, so i have to ring an ambulance and they have to give me morphine for the pain, i hve not been out since i went to my appointment last week ecuse of being in constant pain, so will see what happens in 6 weeks when i go back

Hello,

    I have battled with endo for 18 years- I had the laparoscopy 10/31/16 and find out I had endo too.  I had it all removed and I still have pain that comes and goes.  I haven't had my period in about a year i'm on continuous birth control which has helped a lot as i'm not completely out of comission for 3-5 days but yes the pelvic pain has not gone away.  I usually just lay on my couch with a heating pad and if gets really bad take an ib profen.. I am constantly bloated too and have major disgestive issues- i've been told I have IBS but they wanted me to have a colonoscopy too.  I just became so overwhelmed with everything I stopped going to doctors.  It's been such a long stressful journey with endo.  being ignored, misdiagnosed, endless suffering... I feel your pain! 

Hi!! I was diagnosed with endometrosis in 2009 and in 2012 I had a complete hysterectomy, bladder repair. I still have endometrosis on bowels, and I lost my gallbladder in 2015 to scar tissue and lesions. Because my bowels have scarring all over, I have IBS-C and a Overactive bladder. So please talk with your doctor if your pain is severe in the stomach and abdomen area you may have an abundance of lesions. It took the doc almost 4hrs in surgery to remove lesions on my stomach, I had looked 7 months pregnant. I just wish more research money would go toward finding some relief from this chronic disease.

I wish you all the best, and hope you get the answers. Take care!

Hi, I had 6 months of prostap injections and it was the best i had felt in a long time. It was the only thing that gavery me total pain relief. I'm hoping that I can go back on it at some point but idon't have to take tablets to as to protect my bones.

I'm still waiting for a laparoscopy to actually diagnose it and to see where it is. I've lost 2 with jobs because of it and I strugged daily with noreal tasks. Xxx

I've had issues with horrible cramps and pain since I was 16(now 31) after many trips to er where they would tell my it's just a cyst on my ovary and will eventually rupture and would get sent home, other trips to er for severe abdominal pain that they told me was due to IBS. Then after seeing 4 gynos I finally got one who listened and I had laporosic 2014 and was told it would get better but in fact the pain has only gotten worse, well my gyno retired and I had to go to a new one last year who demanded I needed a colonoscopy which polls where removed(non cancerous) they then said I have diverticulitis. It's just frustrating that no one believes that I'm in pain daily some days worse than others and when I get my period I am basically bed ridden. I just wish they would listen and believe you when you say the pain you have is effecting my daily life

Hi Mutley

my pain started over 4 years ago mine comes and goes and it can be everyday usually first thing in the morning I'm having my op on Saturday apparently my bowl is stuck to my womb I have had no end of problems with my bowel so hoping it gets sorted my pain is located in one side. 

Hi Mutley, I hope you hav found help since your initial post. I have suffered from endo for 36 YEARS, which amounts to about 7 YEARS of my life wasted that i can never get back, spent suffering with extreme period/endo pain days where I was nonfunctional in bed with heating pads, ice packs, and extreme pain and suffering, if you add it all up. I have had two surgeries to try to get rid of the cysts and lesions but I always wanted children, so I opted to not do hysterectomies or ovary removal bc I was holding out hope, however, at 48 now, my hope is gone, so I am going to have a full removal of every single female related part, along w lesions on my bladder and attached to my lower back pelvic region Back to your question: The only prescription I ever found that worked was Norethendrone, which is a progesterine daily pill that stops you from having your period at all, so with no periods, I found I had no pain or other endo related symptoms which did help my quality of life, ability to work, ability to socialize more, etc. So it might be worth a try for any of you out their still suffering. It can cause weight gain and depression in some people but I found my life to greatly improve from it. Unfortunately, I have a genetic blood clotting disorder, & despite being on blood thiners, I ended up getting a triple blood clot likely from the Norethindrone, so I felt I had to go off of it bc I had previously nearly died ftom a DVT and pulmonary embolism. But, if you do not have a clotting issue, I highly suggest anyone try the Norethendrone bc it is something you can take daily for as long as you want, for years, until you no longer need it, unlike the ridiculous lupron or the one you mentioned that only help for such a short period of time and have dangerous side effects so what is the point of even having those drugs available when we know endo is a lifetime chronic, invasive disease that will start right back up again just as bad for the rest of your life after going off those two meds, it makes no sense... Anyway, I also want to inform and encourage all endo sufferers that if you do choose a hormone based mefication of any kind to help you through it that you insist that you get a simple blood test done before you go one any of these treatments to make sure you do not have any of the 7 possible hidden genetic blood clotting disorders that exisit. The one I have is called factor v leiden and is considered common bc 5% of the U.S. population has it and most have no idea that they do until they either die or almost die from a blood clot or embolism. If you happen to pop positive for a blood clotting disorder, then you should not go on any of the hormone based meds like lupron, the one you mention here, any birth control pills or the the norethendrone to avoid the deadly risk of blood clots. Both estrogen (moreso) and progesterone can cause blood clots if you have a clotting disorder.

Now that famous women like Padma L. & Lena Dunham have come forward with books, essays, websites and charities all focussed on the hell of endometriosis on women's lives, the world is finally starting to view it as a true and real thing, which is about damn time bc it is long overdue and doctors are starting to acknowledge it and try to find real solutions for women vs. all the misdiagnoses, rudeness, and lack of belief, stimas, lack of any support and patient craziness or blame games of the past thank God. So don't give up, there is more hope than ever before, ladies!!

And know you are not alone, you are not crazy or a hypochondriac, and that endo is real, is extremely debilitating, and that there are now doctors that can help you out there.

Endo has in many different ways, ruined my once very promising life, and I would hate to see any more women go through this without feeling hope and getting the safe and effective longterm medical help and support they need in order to live a high quality full and enjoyable life that they deserve : ) xoxoxo to all

The only time I have ever had a pain free day was after I had a scraping down. After I would heal from the surgery I would get a week or two pain-free. Other than that I have severe cramps, movement issues, nausea, insomnia, and migraines daily. I start lupron as soon as it comes in and am hoping it works so that I may get a hysterectomy and they can scrape the other organs affected by cysts and fibroids.

I have pain almost every day, more or less. My periods are not that bad, I don't think I have more pain than normal. My every-day-pain is worse.