Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
I have been having random discharge with blood mixed in it, it's very light and always goes away. On top of this tho I have extreme pain everyday this month. Does anyone else have this? I can barely make it out of bed, I went to the gym just to keep on a regular routine, and I horseback rode too, but it doesn't really matter if I exercise or stay in bed, the pain is the same. But I am way more concerned with bloody discharge. I have a doctor appointment on Wednesday and of course I'm flipping out, I mean its like a drop of blood mixed in with discharge that's clear (I know gross, sorry). Anyone?
I was also going to discuss a partial hysterectomy, I have severe anxiety every time I have my period and every birth control eventually fails me. I'm a bitchy, emotional wreck and I just can't handle it. I am having very stress and anxiety about my period all month and when it comes it's so awful I just want to lay down and die. I know this isn't typical and recently its gotten so much worse, I don't want to continue this way. It has never been brought up, but I have done research and would like to at least discuss the pros and cons of it. It's not just the pain of whatever it is bothering me, but the dread of having a period every month and feeling like a non-person for a week. I HATE bleeding, and I definitely have not and never do want to get pregnant after everything I've been thru screw that. I do not want to be pregnant for 9 months and have other issues happen. Sorry for my bitchy post, but I just can't handle it anymore, I'm at my breaking point.
Is what I'm feeling even normal?
ok, I think the anxiety and the fact you have vulvodynia is making everything so much harder to deal with emotionally. Have you tried taking anything for the anxiety or talking to anyone just to learn how to cope with that better? I am in no way saying you are crazy or anything so PLEASE don't think that. I just don't want you to make a decision about a hyst while you are in so much pain and have so much on your mind. I do know stopping the actual period may be what you may want but you may still have all the symptoms of a period minus the bleeding.
((((HUGS)))))
I know you're not saying that, yes, I have talked to someone about it, it didn't change my mind and actually made me more crazy. I felt like they were only saying don't complain, it's a normal part of being a woman. Well SCREW you. I don't want to medicate myself, I tried Xanax and it doesn't work for me it just knocks me out.
Yeah, I had the vestibulectomy less than a year ago, and while initially during sex I don't have the pain from that, omg it burns like hell and I ALWAYS get a yeast infection after sex (I think it has to do with Birth Control because this hasn't been an issue on other pills). Which brings me to where bcps are great, I am sick of popping pills which ultimately stop working for me after a few years. I hate getting on new pills because they make me bat shit crazy and I bleed for 6 months until my body suddenly decides to give me some relief and adjust to what the damn pills are telling it to do.
So, I look like I'm a head case, but I'm just sick of this whole thing, find a cure to give me my life back, I was so much happier 13 years ago without a damn period, and less tired too. GER!!!!
I'm lurking in the middle of the night, as I'm suffering unspeakable pain due to so many factors. I see that you are "up" as well. I read your post to Alana, and realized you're scheduled for a "total" hysterectomy in November. Will you have your ovaries/tubes removed as well? I don't wish to "delve" uninvited into your private thoughts, but I would love to know more of your story.
I am here, if you'd like to share.
~pup
Hopefully, you have been able to fall asleep tonight, somehow, despite your pain and anxiety. It's 3:30 a.m. CST, but I am wide awake and in severe pain. My bone loss/joint pain is a long term effect of early (surgically induced) menopause @ 32. The complete removal of uterus, tubes and ovaries was necessary for my survival. I HAD NO options because the endometriosis was too advanced. They COULD NOT leave my ovaries, because the ovaries feed the disease. Even after removal of one ovary and 2 rounds of Lupron, the endometriosis ravaged my insides/organs.
Let me repeat....I HAD NO OPTIONS. Yes, there were a variety of treatments available even in my "fertile" years. And yes, I wanted babies...several, in fact. Unfortunately, negligent, misinformed OB/GYN's failed to acknowledge the degree of my suffering thereby allowing the endometriosis to THRIVE.
By the time I was diagnosed, the questions were not 1.) Do you want to preserve your fertility? 2.) Do you want to "keep" your ovaries to avoid early menopause? The questions were 1.) Is her body (liver) strong enough to survive the extensive surgery 2.) Will we be able to save her colon, or have to resect w/colostomy bag? 3.) Will residual implants start regrowth from natural estrogens produced in her body? 4.) Can she emotionally survive full-throttle menopause with NO POSSIBILITY of hormone replacement EVER allowed? 5.) How many tumor-suppressing steroids can her body take over a lifetime?
I am concerned for you, on so many levels....not the least of which is your apparent belief that "this" can be "fixed" returning you to the life you want on YOUR terms. I pray that you will witness this "miracle". IMHO you won't. I see that you are consumed with fear, pain & anxiety...looking for solutions/answers that often times won't come. You are also ramping your emotions up on "what if?"
You speak of a hysterectomy to stop your pain and your periods. As another poster stated your bleeding will stop, but not necessarily your pain. You don't want to hear this because you believe your youth/scientific advances trump my old age @ 52/ circa Ice Age...not the animated movie series. The TRUTH is that your average experienced OB/GYN in 2013 (as opposed to 1993-94) remains deficient in his knowledge of the female body beyond pap smears and birthing babies. So MANY young women TODAY are being given empty promises concerning treatment options and relief of staggering pain each month. Those same promises were made to me when I was finally diagnosed with stage 4. They were doctors specializing in female health/reproductive. They should have known BETTER. I was young, and sadly, ignorant of the disease. I just knew I could no longer endure the pain. My GYN/ONC was the first to be honest enough to say "F" trying to save your fertility. My goal is to save your vital organs, thereby saving YOUR LIFE.(which will NEVER be the same)
I say all of this, at the risk of repeating myself, to say to YOU, Alana:
Chances are that no matter which option you choose for treatment, you must first find a way to approach it more calmly...not in the throws of physical and emotional pain. BELIEVE ME...I am not trying to judge you at all. I know you are suffering. I know you're scared. This disease and its options for treatment are so varied according to the individual woman. More often than not, some degree of pain persists no matter what. It can be hopeless, heartless and heartbreaking for some. For others who are TTC it can be the same,until and unless they have a fertility breakthrough!
And though the blessing of childbirth is cause for TREMENDOUS CELEBRATION (for those of us longing to have children) the birthing process does not "cure" endometriosis.
I'm just saying...try to calm down, even if you need your doctor to prescribe anti-anxiety or anti-depressant. NO, not because you're crazy...I hate that word because I've lurked there for long periods of time and revisit often. You are human. You are a woman. You are trying to find a fix-all solution to all things menstrual/hormonal and painful. We ALL want that, but haste makes waste. PLEASE don't base a life-altering decision on fear and the unknown or the promise of a quick fix. There are going to be unpleasant trade-offs, no matter what.
The only real difference is you and I is 25-30 years, and that you have the technological resources to glean wisdom from websites such as this. The women here can offer you so much wisdom if you can just be still and listen. Their sharing of information no matter the stage of their disease, is priceless. That is my regret. I DID NOT HAVE THIS RESOURCE in my 20's. (Sadly, my brother is/was a professor of anatomy and biology @ university level) yet he had no knowledge of the vicious potential of this disease. He still really has no clue beyond the basics which has not helped me at all.
I beg of you to lay aside your understandable rage and sincerely contemplate the information provided by us gals, both young and hopeful or "old" and jaded.
Find some humor, for the sake of your own sanity in dealing with this. I wasn't actually alive during the voyage of the Titanic. But I often refer to my lifelong struggles as the equivalent of re-arranging the deck chairs on the Titanic. I delude myself even now that if this RA intravenous treatment can bring me any degree of relief, I plan on slapping some bright paint colors on those deck chairs!?
My best to you, Alana, for better days ahead. I pray that none of you ladies ever have to find VICTORY in the ability to EAT (without projectile vomiting) SLEEP (without a sleeping pill) or POOP normal (without softeners, laxatives, multiple enemas) oh, and stand upright without steroid injections and joint replacements. If you cannot be grateful for what you have---endometriosis stage 4 will make you grateful for what you don't have (wrong) on any given day.
EARLY ACCURATE DIAGNOSIS/TREATMENT is the HOLY GRAIL
~speckled pup
Please forgive the many typos/spelling errors. I'm such an ANAL CONTROL FREAK...I wish I could make corrections in even the layout represented in the final draft. I am a reluctant "recovering perfectionist". Some days I suffer with it.Some days I just enjoy it. =)
My postings are never meant to be "flippant". I try to support and to encourage, but TRUTH is lacking in the average physician's approach to LIVING with endometriosis..WE WHO SUFFER THE PAIN deserve the TRUTH...good and bad.
Pup, I don't know where you saw that, because I have no plans for any surgery, I am having a consult for a possible surgery in November. And I would like to discuss having my periods go away permanently, because I can't take it anymore, the pain, the blood, it's terrible. I know that endo can still be there after removal, but omg if the blood isn't I would be like 70% better!!! Trust me, if I didn't want my private life being on the internet, I wouldn't be here, I have no shame ask away :)
Hysterectomy isn't a cut and dry thing it's forever life altering and the problems with it are so much more immense.
Once your doctor gets in there he can decide a plan for you but until he does it's just guessing.
This will be the last time I'll say it but you need to get diagnosed. I know your scared of surgery but the complications of a full hysterectomy are much more than a lap.