Here is an after thought. I just had a cat scan last Tuesday for some lower left quadrant discomfort. Because I have not been able to sleep on my right side since like 2012 at least. It feels bad on my left side when lying sideways. The report said I have free pelvic fluid. I am suppose to follow up with my PCP on it. What is/are your diagnoses if you don't mind me asking.
Nope, what they are going to do is exploratory surgery at this point. Endo can only be diagnosed by surgery unfortunately. So, the plan is for them to go in, assess the status and go from there. He said, " there could be nothing or it could be a big soggy mess." They keep saying I'm too young for a hysterectomy at this point, but that might be on the table eventually. We shall see.
If you go for "exploratory" insist that you sign paperwork for everything to be removed. My mom just let them go in to look even though she knew she needed a hysterectomy. The doctor wasn't ready for her to give up on more kids. So she signed the paperwork for them to explore. You guessed it she woke up from from it and the doctor said I am sorry I should have listened we are going to have to schedule you for an entire hysterectomy.
Sham, the word from the doc was that if there is too much endo, that he would try to get it without taking anything, but if worse comes to worse, he would make that decision then. I'm just ready for it to be done. My insides feel like they are going to fall out right now, which is not unusual for me.
I feel for you. my mom's uterus was the size of a football and her ovary the size of an orange when they went exploring. She had pretty much been in bed with what ever otc meds she could choke down for pain. When she woke and found out she would have to have surgery I could see the look of kill the doctor in her eyes. She was so desperate for the pain to be gone. With the doctor schedule it took another month for her surgery. I will keep you in my thoughts.
Honest to god, I feel like absolute sh ** tonight. There are no words. 11 days left already. Humbug. Hoping beyond hope that my PCP will prescribe something to ease it at my pre-op appointment Monday. Tylenol is just not cutting it already.
Seatgirl, I'm 53 now, etween ages 30 - now I've dealt with endometreosis, adhesions, partial hysterectomy from endometreosis & severe dysmenorrhea, bilateral oophorectomy due to ovarian cysts, than a 10 cm paraovarian cyst. Now I have pelvic floor dysfunction and pelvic congestion syndrome, along with bowel and bladder incontinence, pelvic floor spasms, interstitial cystitis, & OAB.
I'm sorry for whatever you're suffering through. I'll be glad to detail if you have a specific question. But i didn't want to detail since I'm not sure what your concerns and symptoms are. Hugs & a prayer! 🙏🌼
You know it's crazy in my opinion that doctors get to decide at what age a hysterectomy is appropriate. At 40, I was scheduled to have a hysterectomy. I didn't have the 1,100. Copay so I cancelled my appointment. I was supposed to have it done October 3rd 2011. I was told in 2007 that I would not be able to get pregnant again. Well the whole thing gives me the willies. On October 3rd 2011, I was at the hospital with my 18 year old daughter, I was living in Oregon and she in California. She had a routine gallbladder removal surgery. Her doctor called me and said you need to come, we don't know what is causing her to lose so much blood. Her stomach was full of blood and it had pooled all around her organs. Thankfully the doctor began giving her blood and whole plasma transfusions. This turned things around. She spent 11 days in the hospital. A large portion in the ICU. Anyhow thank God they discovered she has Von Willebrand's sp? I returned home and brought her with me so mama could take care of her baby. She stayed with me for almost 2 weeks and I took her back to California. I got pregnant the first week I returned to Oregon. I couldn't believe it, I had not intended nor did I want more children. I was 40 and had just had empty nesters for a few months. I was carrying 2 little ones at first but one didn't make it. God knows what we can handle. Now I wouldn't have it any other way. My 3 year old is the absolute light of my life. She makes me smile when I feel like crying. She's a real character. Anyhow thank goodness I wasn't able to afford the hysterectomy. It's very tiring because there are so many things I cannot do with her. It makes me feel guilty and like a bad mom. The days that I overflow the kitchen sink, am calling my daughters by my sisters names, walking into the kitchen and completely forgetting why I was there or cant get a sentence out properly my children make me laugh at myself and we have a good time. I do think that if a woman does not want to have any or more children and has multiple issues with her female organs, we should be allowed to make the decision of whether or not we want a hysterectomy. I believe if you have pmdd a full hysterectomy including ovaries would fix the problem??? Amanda, I hope you can get what you want and need. Something to ease your pain until you're surgery. Blessings to you and hoping for lite or pain free days ahead. You're in my thoughts and prayers. ✌️💜
I wast 46 when I had my historectomy ,but I suffered 3 years with my OB SAYING your not old enough.I had a D/C It helped about 2 months then everything went back to being painful, the next year I had a Thermal Oblasion it helped a co I please of months then started hurting, RHEN THE NEC Yr Another D/C I told my OB that I wanted a Historectomy and he agreed. When he got in I had 2 different kinds of cyst on overies, chronic Cervicitus. I felt so much better afterwards. I hope you get _hat you need to be better. My prayers and thoughts go with you. Sending you hugs.
Anonymous, all I can do for right now is just lay in my bed. He told me the Provera should work. I'm here to say, nope it's not working. It almost feels like I can tell where the endo is, just by what is happening to my system. If I were a betting woman, I would probably say it's on at least the left ovary/tube, bladder and possibly bowel cause that is where I am having issues right now. There are no words that I can use to describe it.
Amanda, I had great relief all three times; hysterectomy, oophorectomy, and mass. The mass was removed in 2010 and I'm not feeling any endo type pain as yet (knock on wood...Lol). I just hope it stays that way! 🙏🌼
Anonymous1971, may God bless you with starting over! My hubby's aunt has her children 17 years apart... Surprise! Quiet time activities help. My granddaughter who is 9 now lived with us 2+ years. Granny was already starting to tire out, so quiet time activities were a must. 🙏🌼
So many stories and information out there. It just adds to my questioning and confusion of what is the correct thing is to do. Things are changing with my body and mind. A hysterectomy is forever. I had to get my gallbladder out 3 years ago, now the bowel problems have changed. Surgery in my case was not a cure, so I am hesitant to have the hysterectomy, that a major one. Hormones have not Been easy for me. In my case the first gyne doc asked a couple questions. Asked about my bowel movements, which are 1 every 2 to 3 weeks. My husband said you are toxic:p. She said you need to fix that. Try a gluten free diet and I stopped drinking milk and eating cheese. Take the pearl probiotic. Come see me in six months and you will be a new woman. Will the bowels they did get better, but natural path said 50 million for the probiotic and exercise. I am a water drinker. At 6 months the pain was same and getting worse, but I was pooping like never before, once a day, made my sisters jealous. The gyne said that I think you have endometriosis and you need a total hysterectomy. Hmmm. Not comfortable with that. I said how do you now that's what it is. She said by biopsy and if we do that we might as will do the hysterectomy.. Hmmmm I didn't like that choice of really no choice. She never at anytime did an internal or even felt my pelvis. I read Endometriosis can be found in other areas in the pelvis area, like bladder, bowels and some other places. Time to move on. Time for second opinion. The new gyne doc took time with me asked lots of questions, explained things, did an internal exam, bloodwork for cancer marker( in past low meaning negative), but in my situation maybe a false reading depending on the type of cancer, another ultrasound, with follow next Friday. She said that for me chances are that surgery is needed because of two growing irregular cysts. The surgery would be for cancer prevention for the future. She said I will probably still have pain after surgery because my total situation is not clear. I have other things going on. A couple weeks ago I got a 8 page questionnaire from second gyne doc to help with my follow up appt. The crazy thing both doctors will be paid the same for their services... I am 47, always have had horribly painful periods. Did birth control, IUDs, estrogen patch, 6 pregnancies(3miscarriages, 1 baby without a brain ending pregnancy and giving birth at 5 months, a year later I was very thankful for my 1 child who is now 16, and then I miscarried again). Time to stop and enjoy my daughter. IUD went in worked for a while for pain then stopped working at about 3 years, kept till 5 years one year off then try again with no relief so put in another IUD in now in place for 2 years. Periods became regular and more painful. I need to be patient. Get all the information I can before making a decision with the surgery. 3 years of pain everyday and sleepless nights due to pain. Through this I am learning lots about my body and test the limits. My Mom no problems with periods and had five kids in a 20 year spand. My older sister has pelvis and bowel issues. My younger sister, horrible periods, sudden times of hemorrhaging, lots of cysts, IBS. I look at my daughter knowing that I am very fortunate to be given the chance to be a mom, her Mum :) Everyone is different and treatments and outcome vary.
Beets, my concern right now is that I have tried everything suggested and still no better, I've done the OCP, Depo(made me 10 times worse), estrogen patch, etc. Will not attempt an iud or the Lupron shot because of my age and other factors. Had my tubes tied in 2012(what a mistake that was). I'm really feeling that exploratory surgery is my only option at this point, after watching my grandmom, aunt and cousin(on my dad's side) all struggle with endo. With me, I have been told that I have IBS, it's coming from your back, it's coming from your hip, etc. And yes, endo can be sneaky. It can be found in other places(bowel, bladder, abdominal wall), but you are right. Everyone is different and outcome can vary.
I had to have an emergency hysterectomy when I was 23 and I fought like crazy not to have it. But after I had my daughter I kept bleeding for 9 months straight really bad and they couldn't get it to stop. I was loosing way to much blood and staying severe anemic and hurting so bad that they told me they didn't want to do with it because of my age but that if I didn't I would die. I had so many things wrong with me, the main thing was severe endometriosis but they went in and ended up doing a partial hysterectomy and had to do a blood transfusion but due to so many other problems they they ended up doing a complete hysterectomy and other stuff that I ended up going into menapause the following year. It's been a nightmare since. So I don't know wich was worse, all the problems or the hysterectomy and all the problems associated with it.
Hi Amanda, I hear you saying that you are trying all that is being offered for you. Good for you for trying and good for you to say I don't want to try that. You are in charge of your body. For me it does bother me and I do get overwhelmed and frustrated when I try something and it doesn't work or I am not comfortable with what they are saying like what the first gyne doc said to me. The emergency room is not a good place for me unless it is an extreme case then I choose the one I go to. Some health care providers do not understand or care to and are no where near being compassionate. There is an er doc that I refuse to see. He said on multiple visits that I am a woman in her 40's you is a drug seeker. He blew me away. Didn't even check me out and had his answer before seeing me. I don't do street drugs or have a history of this. Look at my chart fella. You have the ability to check what medicines I am on and use in the province I live in, my health problems. My body systems are confusing, but I am not the only one in this position. I am glad to be able to connect, support and even brainstorm. Thank you every one. I never thought this would happen but it has and I am in the situation trying to find my way and the pain is getting worse. Amanda I get what you are saying and trust this is what it is for you. Keep on talking. You are important as a whole human being. Right now the only dream I have is to have a pain free moment from this even if it is only for 20 minutes, that would be nice. My wish is simple. Your saying Exploratory surgery sounds like a possibility you might try. It's exploratory. Keep on asking questions. Even confirming why they would do this is putting every thing on the table for better understanding and accountability of the Doctor. Tracking what is going on is to my benefit. For me I need to be accountable for my health. I see a couple doctors today and I have asked my husband to attend so he is part of what is going on in case I miss something. He will attend my gyne appointment next week because it is complicated and I need a support to understand what is going on and it's good he knows. I am fortunate that he has said yes to attending them with me. I am lucky to have that option. I could ask my friend or I am sure my spiritual care worker would help me. I can't do this alone anymore. I am asking for help because it is beyond me. Amanda I do wish you well. Thank you for sharing. Even if it is frustration. Sincerely, Beets
I am thankful for my husband's help, but he is not in constant pain, he sleeps at night, oh yes and he does not have the vagina in our family. He has never had a painful period or miscarriage or an ultrasound wand stuck up into his junk ever six months and the wand is so far up it feels like they are poking my brain :p. But I choose him to be my support anyway :) Thank you to him.
I have no more email pain. I do get pain with the IBS flares. But here's something to think about for all of you...
They removed my pelvic mass (a paraovarian cyst that grew from a spec of today's left behind from the oophorectomy) in August 2010. The mass adhered to my bladder, intestines & rectum via endometreosis & adhesions from previous surgeries. But there was no more abdominal pain.
My recuperation time was to only take a year. I wasn't pooping right or peeing right. I was getting pressure in pain in the groin & perineal area, down my inner thighs. I couldn't tolerate standing or walking because it made the groin, peroneal, & thigh pain worse. My Colon surgeon diagnosed pelvic floor dysfunction, and I went through 2 months of pelvic floor therapy. It seemed to help with the pooping & peeing.
But it didn't help with the groin, perineal, and thigh pain. So in December 2011 the doc sent me for an MRI with dye of the full abdominal area. Like and behold he informed me, "You have a mass of engorged veins in your pelvis. It's called pelvic congestion syndrome. It's basically unheard of here. I advise you to research and find a doctor who specializes in this. When you do let me know so I can refer you out.". It took me until March 2012 to get in with a doctor 3 hours away. She did surgery on April. It was immediate relief from the perineal, groin & thigh pain, and the edema in my legs weren't away a few months later.
Flash forward to this past March, when I began to have edema again, along with pain in the legs. In July my cardiologist did an ultrasound on my legs. I now have veinous reflux in the lower legs, hence the edema and pain while walking, which I have to wear compression stockings. I asked the doctor what he thought may have caused it, and his reply was, " most Lilley the pelvic congestion and/or the treatment for it. " Lovely!
Pelvic congestion syndrome & pelvic floor dysfunction, though more common in women can also occur in men. You will also find PCS & veinous reflux under "as arteriovenous malformations.".
What have I learned from this? No matter what you have or how you decide to treat it, chances are it will create another problem.
Research any treatment methods a doctor wishes you to have. Know the pros and cons. Think about it/pray about it until you are comfortable with the decision. It took from 1995-2015 to go from a hysterectomy to what's going on now with my pelvic cavity & floor. I wish you all the best ladies (young and older), and may you be blessed with less problems in the future! 🙏🌼
Flappys, the discussion after the appointment where surgery was scheduled, I did make my wishes known. I let him know that if the damage was too much, I would like him to consider a hysterectomy. He said at this point, that option is on the table all things considered, but again it would depend on what he finds. The fear of the unknown is terrifying and I do not like not having control, but I just need to let go and let god.
My medical problems are almost all urological and gynacological. To give TMI, my bladder, vagina, urethra, burns like molten fire all the time. If you've ever had a bladder infection, think that, but times 10, all the time. I've been told it's nerve damage due to a condition I was born with called a bladder Exstrophy. So because of that, I have never had a day without pain since I was a baby. Because of that, I have a severe uterine prolapse, Vulvadynia, severe nerve damage, and an immense amount of scar tissue. Oh, right, I was also diagnosed with Endometrioses when I was 14. I've been on continuous birth control but I still seem to have what I think is ovulation pain during the month 😐.
My urologist will be doing exploratory surgery soon hopefully, a precursor to having a hysterectomy. I'm 34, btw.
Amie, yes I can totally understand the ovulation pain periodically during the month, despite being on Provera. For me, right now, it seems to be a delicate balancing act with the damn hormones. Hoping to find out what my options are here soon at post-op appointment. I'm actually leaning more towards the mirena at this point instead of the continous Provera. Hate taking pills.
I understand that 🙃. I'm so used to taking pills it just doesn't bother me anymore. I hope Morena will work for you 😊.
I have heard a lot of horror stories about how painful the insertion and first few months are. My suggestion is make sure to take a muscle relaxer and a pain pill prior to that appt. definitely discuss it with the doc so there are no surprises! Good luck Hun.
I had 15 laparoscopic surgeries in order to get pregnant 6 times. Out of that, I have my 2 boys. They are a great source of comfort for me. I had a hysterectomy at 29. By then I only had one ovary left. It took over 7 hours for them to do what was supposed to be a simple complete hysterectomy. Everything was stuck to each other. It was a mess. I feel for you, and we are here.
Agreed Amie. Amie, honestly I have a godsend for a gyn. Really good so that makes it really tolerable at this point. Poor guy even asked me on Tuesday afternoon if I was ready for surgery. I just gave him a stink eye, and said, "Yes I'm ready. I wouldn't be laying here if I wasn't." He then attempted to explain the procedure steps to me. I said "I don't want to know. Just do what you have to do but make sure I'm knocked out before anything gets started."