Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

endometriosis

Mar 27, 2015 7:37 AM

Hi. I dont expect any replys to this but i feel i just need to let it out how im actually feeling. I have endometriosis and im currently going through another bad spell of pain. Since October its been every month that im in agony. I just feel so depressed. its so debilitating and im so tierd all the time. Im on strong painkillers which just dont kill the pain they just my head feels like a cloud. I cnt wrk coz i cnt concentrate, which is so hard. Im javing a lap in 4 weeks. But im just worried it will comebback. And we want to try for a baby but im so scared i wont get pregnaant. I dnt know how ill carry on if i cnt.

Mar 27, 2015 8:36 AM

nyour to ardy,I am so sorry you're going through this! I had endometreosis following the birth of my first child in '84, all the way to 2010. After my first child was born it was horrible. I used a heating pad a lot. And when I had my cycle I drank about 3 oz of dark red or purple wine each day (I think blackberry but maybe not...fibro fog block...lol). My mother in-law told me about it and my husband's aunt confirmed that something in the wine helped thin and reduce the flow and helped relax the abdominal muscles. You don't need to drink a full glass for it to work. I don't drink because of major hereditary alcoholic tendencies, but I did drink the wine then. My endo symptoms were worse in my 20's & early 30's.

Whatever you do dont let a doctor talk you into a hysterectomy to "stop the excessive cycles & endometreosis"! My doc convinced me to do so and its caused many further problems and surgeries, not to mention continued endometreosis symptoms from 1995-2010. I've had 4 additional surgeries and continue to have problems of pelvic congestion syndrome and pelvic floor dysfunction that involves the bladder & bowels.

Staying stressed & worried about getting pregnant isn't good because it can hinder conceiving. There's a lot of power in your thought and mind. Recognize when you're feeling negative about it and try to consciously change your thoughts to believing that you will conceive. I'll keep you in my prayers,that your lap will go well &you will conceive. 🙏🌼

Mar 27, 2015 9:50 AM

Thankyou so much hun yes iv got a heat pad on my abdomen and lower back constantly. Iv got some red wine so might have a small glass later if i can tolerate it. Iv not eaten since tuesday night. But managing to dink hot squash. It sounds like youve beem through alit hun im sorry. I have been told by a few doctors that i should get pregnant them theyl do a hysterectomy but i want to avoid that. But it annoys me coz they all keep banging on about me getting pregnant and it will help but uts to bloody painful to even have sex so i dont know how its going to even happen. I just hope it gets easier after the op. Thankyou so much for your responce and taking the time to read what i had said i really appreciate it xx

Mar 27, 2015 10:03 AM

If you're having sexual pain, you may already have the pelvic floor or congestion issues, or something else going on. They diagnosed my congestion with a dye MRI. Get your primary doc or GYN to refer you to a urogyn or pelvic floor specialist. Or even a doc that specializes in getting pregnant (fibrofog blocking the name...lol). Theyll do more investigation for whats causing the pain. I didnt know specialists existed in the gyn field until 8 years ago when i first needed one. Sex should not be painful at your age (20-40 range) unless something is wrong. I'm 53 and its nil to none for 4 years, since my last ovarian cell mass surgery. It did a lot of damage to my insides. Praying you'll get the right doctor to help.

Mar 27, 2015 10:18 AM

Ward Hi I am sorry that you are going thru this. I had endometriosis myself,my Ob/gyn to me if I could have a baby it would help me also. When I tried to get pregnant I couldn't get pregnant, he put me on fertility drugs it took 3 rounds before I got pregnant with my oldest Danughter she's 30 now. I had another baby 14 months later,it helped for about 14 yrs then I started having a bad time with bleeding, I tried to get my Dr to do a Historectomy but he refused instead he did a D/C which lasted 2 months then , he did a Thermal Oblasion D/C, lasted about 3 months, he finally agreed to give me the Historectomy, after the tested everything I found out I had Chronic Cervicitus,both overes had two different kind of cyst. No cancer Thank God! I have not had any kind of problems since. By no means am I suggesting for you to have a Historectomy, I was just sharing my journey.I was in my mid 40's by then.I would ask for a 2nd opinion, and I hope you can get pregnant soon. Will be keeping you in my thoughts and prayers.

Mar 27, 2015 12:59 PM

Thank you for sharing your journeys its horrible feeling your in such a lonely place and feel like i could scream and noone would here me. I keep saying this to doc and gynea consultant that its not right that im in so much pain during seual intercourse iv been sick with the pain at times and that not right and all thayv pritty much come back with is have you tried using lubrication and changing position. I could jus swear at them i tell ya. But thank you for your replys hopefuly ill get somewhere with this lap. Thabk you for your thoughts and prayers xx

Mar 27, 2015 1:40 PM

Wardy, Weezie12 is right about a second opinion. Many women have hysterectomies with no problem and many others end up like me. Second or even third opinions are important for life altering changes.

Are the doctors you're under male or female? Its been my experience that women OBGYNs are much more understanding, compassionate, and willing to figure out GYN issues. I've had both and well let me put it this way: a male OBGYN will never understand what women's symptoms are like no more than we can understand theirs; our anatomy needs to be addressed by female docs who can relate. And (apology to any guys reading this, no chauvinism intended) if the male doc is over 45 they're more likely to be stuck in the old fashioned mind set of "She's a girl. It's all in her head. She just wants an excuse not to have sex."

I had a few of those when my symptoms first appeared in 1995; I was 34, had 2 kids and loved being with my husband, until the pain started. I'd be doubled up in a fetal position, crying for hours afterwards, because of painful spasms in the whole pelvic region. In the first surgery, where they convinced me a hysterectomy would solve all my problems, they found a large amount of scar tissue and endometerosis. Eight years later they had to go back in because I developed cysts on both ovaries; again finding scar tissue and endometerosis. Seven years after that I began to bleed and knew it was abnormal. I'd been complaining again for 2-3 years of urinary, rectal/bowel, and sexual pain. I'd swelled up, gaining 20 lb. They went in and removed a 10 cm paraovarian cyst and had to repair all the organs it had been growing into...hence my pain. They had to repair the bladder, rectum & intestines, remove my appendix, repair a hernia, and clean out more scar tissue & endometreosis. A simple internal ultrasound was all it took to find the mass (growth from missed ovarian tissue during previous surgery). But my PCP & GI doc all kept brushing it off, trying to pacify me from one visit to the next. When I bled I returned to the previous surgeon who found it.

Trust your own instinct. Go to as many doctors you need until you're pain is addressed and taken care of to your satisfaction. You're your own best advocate. 🙏🌼

Ready to start relieving your pain?

Join Community