I am 24 and have had moderate to severe pelvic pain for as long as I can remember, in fact untill recently I thought it was normal to experiance some kind of pain everyday! I find this sad. I have had multiple ovarian cysts 3 of which have been complex I had surgery finally last june to remove one of those started out 2.2cm but grew to 3.3cm in 5 weeks so they removed my mirena (they thought it was making it worse) and scheduled the surgery when they went in they found it had ruptured but I had an overwhelming amount of adheasions everywhere! My ovaries were adheard to my pelvic wall so the dr removed the adheasions and put a dissolving mesh netting in to keep from returning but 6 months later they were back and so were the cysts the most recent they found a week ago I went in cuz I have been having more pain than normal and I hadnt got my period since march 31st? The ultrasound resultsay " 4 cm complex cyst on left ovary with low internal echoes (no idea what this mean btw), cystic areas and internal septation." also says I have a cervical cyst but its TINY 9 mm. I am just so lost anymore and feel like I am becoming more and more depressed from being in constant pain and it effecting my life so much. The dr said after it all started returning after the surgery that the only real option left besides lupron ( which I refuse to take) is to have everything besides the ovaries removed but I am still likely to get ovarian cysts and there go my chances of having another child. Please any advice or support would be such a blessing!
13 May 2011
oh wow i dont know what to say but i'm sorry, iv'e never had to deal with this problem so i don't know how you feel. but i do know about chronic pain, i have had four back surgeries and have been in chronic pain for over 10yrs. i'm on a butt load of medications that keep most of the pain away, but what am i supposed to do take opiates and narcotics the rest of my life, it's kinda like you it's a catch 22. either stop taking drugs and deal with pain or continue drugs and control pain. like you remove everything be pain free, but no future children then hormone drugs, or leave it and be in pain and more surgeries. it's a personal decision we all have to make and it's a hard one. i really don't know what to add, but if you ever want to send me a private email just to talk i'll friend you
your friend in pain
13 May 2011
Hi, i'm sorry to hear about your medical problems, it must be really hard to deal with! I can understand why you refuse to take the Lupron, i would be wary of it myself. Are you on any pain control meds now? Do you have a preference between natural remedies or prescription pain medications? It's difficult to recommend a treatment, i am on a cocktail of meds myself and can tell you what works for me, but you really need advice from your dr as he/she will know what is best for you. If you want to try natural remedies then there are some things i could suggest. If you want to write back and give details about the questions i have asked then hopefully myself or another member of the site can advise you better.
13 May 2011
I was recently diagnosed with endo,i was going through constant pain everyday for i dont know how long,it got to the point where i was asking myself"Am i imagining this?"Finally after many waits and trying diferent MILD painkillers they had to bring me in to laser the endo plus other things that i still do not know about,the surgery was 3 weeks ago tomorrow, i have app with the surgeon thurs coming to see what exactly went on while i in surgery or/and what they took away.I'm still recovering after the laoparoscopy so i know it was more than lasering the endo that he preformed but unfortunatly the way they work here,your not told straight away how it went or what exactly was done,crazy i know,i'm going out of my mind to know what exactly they done or what will happen from here.
Anyway just wanted to say i'm so sorry for what you're going through,i can completely relate to the pain you are going through,it would certainly make you depressed constantly been in pain,its horribble.Did they tell you what stage you are at with the endo?Sorry i cannot be of help of what you are asking as this is all new to me,i do not know what is going on with my own body or where i am in stages,i dont know about the treatments or homone injections-i have'nt been told anything yet,but i just wanted you to know you are not alone in this.And post me anytime you want to talk.
Take care my friend,i know the pain aint easy and i pity you for the hardship you are dealing with.
BTW i'm also 24
13 May 2011
I just want to say how sorry I am that you are having to go through this. To hang on through all this pain with the hope of having a baby is one thing, but I didn't realize the cysts would still occur when the ovaries are gone. I would, if possible, try to have a child as soon as possible so you could at least have the ovaries removed. And adoption is always an option. I would also consider seeking out an additional opinion from a tertiary medical center - a very large University Hospital or Medical Center like Johns Hopkins that sees this sort of problem all the time. I'm sure you have researched this completely - I wish there were more options for you. Take care - EJ
13 May 2011
i am so sorry you are in so much pain and being so young!i had female problems too and had a hys.but i was 39 and already had grandchildren when i had this surgery!i'm praying that your pain will ease and you will be able to have another child!
please ask your doc about pain meds that might help with your pain!you have a child to raise and pain doesn't help you with this ,cause it can take you down but please don't let it!you are a strong woman because you are not a fraid to reach out and ask for help!we are all here for you if you need us!most of us have been in pain for years and are older than you !so we might have advise that will help you!!!
good luck & God bless!
13 May 2011
I am now 46 and I suffered w/endo from the age of 24 to 40. 1st I was diagnosed as crazy (back then Dr.s didn't really know about endometriosis) and they sure as heck wouldn't give me anything for the pain!! Maybe someday we can talk privately) finally I found a dr who would give me a scope and diagnosed me. I was given the Brand New Drug Lupron. Being 26 and menopausal was terrible, but it worked for about a year. The good thing about lupron is you are VERY fertile once it is out of your system. I chose to then go on to taking (I dont remember the name) birth control shots. I didn't have cysts at first, I did later and had a complete hysterectomy) but I just kept taking something so I wouldn't have a period so my scar tissue wouldn't grow. I did that for a long time and put my body thru a lot!!
I just assumed after 15 yrs of treatment I wouldn't be able to have a child. I was sad, but my body had been thru so much and it was Gods choice... Well, let me tell you!! WAS I EVER WRONG! I had been w/o a period for 15 years and when I quit taking medicine..I went a whole year w/o a period ( or birthcontrol) and something just told me to get a pregnancy test!! Guess what? I have a beautiful 10 year old daughter!!! So sorry for the speech, but I have been where you are and I KNOW how lonely and hurt you feel!! You still have Choices, 1. Try the Lupron for 3 or 4 months and try to get pregnant. ( it does help w/pain but you need stronger pain meds) 2. Love the child you have 2x as much! 3. You still have options like adoption, surrogate, etc. But please quit being in pain!!!
Honey life is too short, if you have a partner then make a decision. If you don't have a partner then make a decision!! I think once you've made up your mind, everything will get better, very fast. I wish I had made a decision earlier in my life (Just because of the pain, depression, and finally the money)
Sorry for such a long response, and I hope this has helped!! I will make you a friend and if you want you can email me okay? Love Sweetpea
P.S. I am not a doctor, nor do I want to be... I just wanted you to know your not alone.
13 May 2011
I am telling you in all honesty there are many meds that work for one person and then the next one it doesn't help it's because we are individuals, if you can't find a satisfactory answer from your OB/GYN then maybe you need to seek guidance from your regular doctor and if it comes down to it there are alternative medicines like Lyrica and Cymbalta for pain and others that are used for anti-inflammatory use, then when all else seems to fail I didn't have the choice but to deal with opiates but to be perfectly honest what one works for me might not help you, I am just going to pray that God will guide you through this difficult time in your life, please know that I along with many others care and are always willing to help if for nothing else but listen
29 May 2011
I also have endro pain... next week I am going in for the Lupron shot... my doctor will only give me Naproxen for the pain, Im told to take three Ibuprophen four times a day... what a joke ! even after I told him ever time I take it I get severe cramping and heartburn... I get no relief from the pain.. 3 out of the last four weeks I have had my period... This is a terrible affliction we deal with... My doctor says its not his job to keep me in a drug induced state!!! I range from mad to depressed to anywhere in between daily! Lack of sleep exhaustion has caused to have to quit one of my jobs, I see no other choice than to take the lupron.. I feel that my doctor only wants this to be an option, Ive tried to ask about the bad reports He waved his hand in my face to shut me up and said to let my experience be my guide!!! So frustrating.. If I had a cut in my stomach the pain could be seen!!! your friend in frustration also...
29 May 2011
How many laps have you had and how many is your doctor willing to keep doing?
Right now I am taking birth control for the endo..it helps a lot. I didn't want to go on it and I even cried(a lot) when I knew I had to for a while. But it's helped me a lot and even going on it for 6-12 months can help you. And just stop them once you wanna try to have kids again.
Besides that I used heat and really strong pain killers to help me..I know that's not for everyone though.
Good luck, and hang in there. I know how it is, we all do and we're all here for you to talk/vent!
30 May 2011
I was speaking to you when you sent your post,i told you i had endo removed and was waiting follow up app from gyne,well i had it,so said would update you.
He told me i had endo on my left ovary and the walls of my womb.Wanted to put me on hormone injections to put me into the menopause for 3 months but i didnt like the idea of all the side effects.He said he removed most of the endo and seen as i didnt want to go hormone treatment,he'd try my bc pill back to back for 3 mths and see how that goes.
As it stands he told me with the work he had to do and because the endo was covering my womb,i have up to 3years to plan more kids from what he has done,depending if it stays away that long or if it gets worse,its time will tell kind of thing.
I told you in the last post,i'd let you know how it went,so i'm hoping to hear back from you,let me know how things are going for you,we are the same age and going through alot of the same,i can completely relate to the constant pain and it makes life so hard.Let me know how you're doing,i wish you well.
Take care and i hope you're better than last time we spoke
31 May 2011
Sweetie, I so feel for you. I went through this very same thing at 21. I ended up having to have a complete hystectomy because between the cycts, the bleeding & infection it was that or die. Luckily I had my children already . Do you just have one child? Count that as your blessing my dear heart & get yourself well so you can enjoy your life. Get a second opinion if you are not satisfied with your doctor, but unfortuneately it does sound grim. I know this isn't what you want to hear, but you must face this & be strong. The other child you have needs a Mom. Stay strong , & the best of luck to you...
19 Jun 2011
I know how you feel. I also felt that the monthly pain was normal after having been told that by a doc. Last year after reading an article in a magazine and a trip to the er for what i thought was a kidney stone but turned out to be a cyst and a uterine infection, i talked to my obgyn about endo. He agreed that it probably was and set me up for a lap procedure. They confirmed endo on and around uterus and bladder and removed it. I was gonna take the lupron injections but they were to expensive. I was advised to try for another child within a year of the surgery as i will be looking at possibly having a hysterectomy in the next 5 years. I am only 27. The lap was the best thing ever for a few months but the pain is coming back again. Not sure what to do cuz docs dont understand the pain we're in on a daily basis and dont want to prescribe anything stronger than motrin, which doesnt help mine at all. I understand the crackdown on narcotics but it is punishing us all for the sins of a few. If you find something that works for your pain please share the info.
30 Jul 2011
Personally I feel that chronic serious pain should be taken more seriously by physicians than they usually do. I mean someone is serious chronic pain can get so depressed and dejected that they may have suicidal thoughts. I mean really if one is hurting all the time what is the point.
I too am in chronic serious pain. I have degenerative disc disease in my lower back. It is inoperatable. So he sent me to a specialist in treating pain.
I have been taking morphine in the form of MS Contin or Kadian for several years now. Now I know many will just think I am a junky but I don't care at all . I also see a phsychiatrist and he feels that I have taken the best course
that was available to me. I have a wife and two sons and they like me better not in agonizing pain . I take it exactly as prescribed and have no affection for morphine. I am physically addicted but not mentally. It is my insulin so to speak like for a diabetic.
I am not saying you necessarily go get you some MS Contine or Oxycontine but if your pain is really bad and it is not going to get better then you might consider going to a someone who is an expert in managing serious pain.
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