Hello, Endo

It’s not that my Mirena is failing, according to the doctor. But, I am exhibiting symptoms that suggest the endometriosis has decided to party in my pelvis, once again.

Endometriosis is that spaz you didn’t invite to the party, of course, but who shows up anyway; the “friend” who always drinks too much and ends up dancing on the table, whilst stripping down to their knickers. It’s Naproxen and a heating pad to the rescue. And maybe, just maybe this time, endometriosis will take the hint, climb down off the table that is my uterus (just stay with me, people), and scram.

A girl can hope.

I’m scheduled for a pelvic scan Wednesday. Doctor suspects an ovarian cyst. It sure feels like crazed friend brought a date to the party. And he’s a wild type.

I’m not a partner, especially when it’s going down in my pelvis. That stuff needs to stop. Now.

Ask Endochick: Unexplained Bleeding

Melissa writes: I had my uterus removed 4 years ago do to endo. Now I will be having my ovaries removed do to endo cysts. I am having issues of bleeding ( fresh and old blood) along with milky discharge. I also feel sick when this happens along with sharp pains. I am also losing more hair than normal for me and running low grade temps off and on. Please tell me is this all do to the endo or could there be something else going on?

Melissa, thanks for your question. To begin with, as I’m not your doctor, I cannot diagnose you. Nor can I treat you. I can offer you some information that you — and other women in this situation — can use.

Seeing as you’ve had your uterus removed via a hysterectomy, any vaginal bleeding should raise a red flag. This could be from endometrial — i.e. chocolate cysts — rupturing and releasing their contents. Or from a more insidious nature such as ovarian or cancer.

The milky discharge you mention could be from a candida — or yeast — infection. Of course, there is always a chance that a milky discharge coupled with blood signals cervical cancer . But it’s important not to jump to conclusions.  

If a symptom is occurring enough to alarm you, I urge you to ask your physician about it.

You mention you’re having the ovaries removed because of cysts. Are you current on pap smears? Make sure you’re current on STD testing and cancer screenings, as well. Cover all your bases.

You mention you’re having problems with hair falling out. This could be due to a hormonal or nutritional disorder. It could not hurt to ask your physician to run thyroid panels (looking for hypo and hyper active thyroid disorders) and a panel to test your sex hormones (estrogen, testosterone, etc.) When your thyroid and/or hormones are out of balance, your whole system will be off kilter.

Whether all of this is related to your endo, who knows! Sorry 😦 As I said, I’m not your doctor. I don’t have access to your test results. But I can say that a lot of women  with endometriosis — myself included —have an umbrella of chronic illnesses with our endometriosis diagnosis. So it could very well be endo related and all clear up with the removal of your ovaries. Or not.

If it were me, though, I would have my doctor run hormonal panels, thyroid function tests,   check for a yeast infection and screen for cervical cancer. 

You may this is overkill, but the last thing you want to do is be nonchalant with you health. Consider it this way….

• Do the hormone panels now and you’ll have a base line for when you’re in surgical menopause.
• If you’re losing hair, checking thyroid levels is an inexpensive and easy test. If your numbers are within norms, then perhaps it’s just time to reach for the hair replacement shampoo. But at least you know. If not, you’re avoiding complications like thyroid storm and heart trouble.
• Yeast infections are no fun… enough said. If you have one, get it treated.
• Screening for cervical cancer is so important! I cannot stress this enough! My own aunt is undergoing chemotherapy for cervical cancer right NOW! She skipped her regular paps for YEARS! Her cancer is Stage III, was inoperable and thankfully the tumor is shrunk enough to operate. If you have ANY unexplained vaginal bleeding or discharge — especially since you have no uterus — take precautions and get a pap smear. After all, it’s your life!

Melissa, I hope I’ve helped. Remember, I’m not a doctor. I’m just a fellow endo patient helping another. Good luck.

Dancing With the Stars – Endometriosis

While I don’t watch this show, I have heard about the controversy surrounding two of the stars’ recent admittance of having Endometriosis. The first being Julianne Houghs. She is quoted as saying, “They want to clean out the cysts and take out my appendix, too, because later on it can be affected by the cysts.”  I’m assuming – in this case – if these were endometriomas then there would be no need for a diagnostic lap because the doctor would know what she had. I’m sure, with the money that doctor is probably charging in Hollywood, a CA125 was done to rule out cancer for those thick walled cysts since she hadn’t already had confirmed endometriosis. Thus, leaving only a diagnosis of endometrios and no need for a diagnostic lap. Still though, from a public relations perspective – it would’ve been wise for her to stay mum until after the surgery and then come out with her diagnosis since both the EA and ERC say a laparoscopy is the only definite way to confirm endometriosis.

Now, Lacey Schwimmer is another issue. She is quoted as saying, “I went to go get checked out today and I actually have the beginning onset of what Julianne has, which is endometriosis, and it hurts very bad,” admits the dancer. “Right now I’m insanely weak, and the room is spinning.” If her doctor suspected she had endo, he should have put her in for a lap to diagnose it and clean it out, and help her pain and weakness (which I assume is from blood loss). The earlier endometriosis is diagnosed the better the outcome for the patient! Just tossing an endometriosis diagnosis onto every painful or heavy period can be dangerous, and I’ll get into that after I offer two quotes below:

Endometriosis Association:  “Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices”.

Endometriosis Research Center:  “Endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive”.

Now, with that being said: While endometriosis can ONLY be diagnosed definitively by a laparoscopy, doctors will often go on patient history coupled with family history, and symptoms and give a “possible diagnosis of endometriosis” or “suspected endometriosis.” Why is this important? Because there are a few medicines that insurance companies will not pay for until a laparoscopy has been done to confirm endometriosis. Until then, a doctor cannot use medicine like Danazol or Lupron to treat “suspected endometriosis.” I had “suspected endometrios” for over 10 years. My doctors were sure that’s what I had based on my symptoms, what medicines worked and didn’t work, and the fact that my mother had it and my aunt. BUT even they told me it couldn’t be confirmed until I had the lap.

NOW – why does the EA and ERC, and the American Medical Association call for laparoscopy to confirm the presence of endometriosis in order to make the diagnosis? That is because there are a host of pelvic and abdominal maladies that can mimic the disease, and often endometriosis sufferers suffer from at least one of them as well (i.e. IBS).

These are:

Infection – this is especially true if your symptoms come on suddenly and out of the blue.

Diverticulitis

Irritable Bowel Syndrome

Inflammatory Bowel Disease

PID

Vaginitis and BV

STD’S

Functional Ovarian Cysts

Ectopic pregnancy

Do you see the need for the laparoscopy protocol???

Let me provide a real life example of the importance for DIAGNOSIS:

My sister, she was 22 when this occurred, began bleeding profusely. Soaking pad after pad, months rolled into one after the other until she went three months without a single break in her period. That’s three months without a day where she didn’t bleed. I never had excessive bleeding with my endometriosis – mine is all pain. My mother, though, bled constantly. My mother told my sister that that was how her endometriosis started. Since my sister couldn’t get into the doctor right away, she felt she could wait another two months through this hell of constant bleeding until her annual exam. At her annual she described what was going on, her family history, etc. Her doctor said that it could be endo since my sister did have a history of some nasty periods and had a failed marriage because they tried for 2 years to have a baby and couldn’t get pregnant. My sister asked to be treated, doctor said all I can give you is a depo shot to stop the bleeding because it’s not confirmed. They agreed to see if that would stop the bleeding first because my sister didn’t have the time at work to take for surgery. Meanwhile, her pap results came back – she didn’t have endometriosis…. her bleeding was from cervical cancer.

I am not discrediting the fact that the  women have endometriosis. I am sure they do and feel horribly for them. No one should have to get this disease. It’s a terrible, chronic malady that needs a cure. It afflicts too many women! We should stop bickering and band together to fight this! That was the point of Jeanne’s petition. Endometriosis is getting attention right now because of the DWTS’s celebrity, but the wrong message is getting out there. Her petition is simply calling for more media coverage of the FACTS. And we need that. How is this disease DIAGNOSED and TREATED? Let’s get that covered on Oprah. A whole show devoted to it. Could you imagine the women we could reach in that ONE HOUR? Women who are sitting on their couches, laying on their beds, in pain, curled into balls, slaves to their heating pads, drugged on pain killers? We could reach them with a message of hope, a message of “there may actually be something wrong with you other than just a painful period.” We could give them reassurance that it’s not all in their heads. There is nothing wrong with living with a “suspected endometriosis” diagnosis, especially if you’ve ruled out the biggies that could kill you. But the lap can confirm, open up pathways to better treatment, and can give you that “I told you so” leverage we endo sufferers need when we are laying curled up on the couch knee deep in tissues.

Please, let us stop this bickering and sign Jeanne’s petition. You can find it here:

http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures-page1.html

There is nothing wrong with more awareness and education when it comes to this disease – or any disease.

Let me finish by saying I do not discredit that either DWTS woman has endometriosis. I am not their doctor, nor do I have access to their personal medical records. I am just going off of how they are presenting their endometriosis to the public. As celebrities they have a responsibility to their fans to be responsible with their words. Before saying they have a disease or illness, they should make sure they have been accurately diagnosed with that disease. There are some diseases and illnesses that if a celebrity came out and said they had without a diagnosis, there would be a backlash – i.e. cancer. Could you imagine if Christina Applegate had come out and said “Well, I felt a lump and knew it was cancer so I announced it as such before I had a mammogram.” No, she had a mammogram and a biopsy before she announced to the public that she had breast cancer.

People who suffer from diseases, especially chronic diseases, do not take it lightly when some one comes along and willy nilly says they too suffer from it without proper diagnosis.  A doctor should always be cautious and add “suspected” or “likely” before a disease or illness until it is confirmed.

I should be

I should be doing homework but I’m blogging, obviously. My son brought the headcold’s home from school and it looks like out of the 3 other people in this house – I got it! I had errands to run this morning and by the time I got back – coupled with the fact that I need to leave again around 1:45, I just figured that it would be more cathartic to waste time doing pointless things like surf the web and check emails. I was going to watch a movie on Netflix, but just couldn’t muster the energy to pick one.

Jeanne left me a long and thoughtful comment on one of my most recent posts – dealing with the hysterectomy and my fustration with the Dr. and her NP. I want to thank Jeanne for that. It did get me thinking. When I had went in for that initial cyst-hurts-me visit I hadn’t known my Endocrinologist had cleared me for surgery! Seeing as I had made the decision to have this thing done back in MARCH, and all this other mess had happened over the summer, I had decided to try and hold onto my ovaries as long as possible – as long as they are healthy anyway. I didn’t know I would begin having problems with them again so soon, either. But maybe it’s a godsend that Dr. wants to have a consult with me about this surgery. Maybe there’s a possibility I can just have the bad ovary (the left one, cyst maker covered in endo) removed and have whatever endo they find excised off while they are in there. And if she can’t do this, maybe she can point me to someone who can. One of my concerns with the surgery is menopause. I don’t dread it or anything, cause I know eventually it will happen. But the thought occured to me the other night when I was reading through some of the experiences with hormone therapy – I can’t take hormonal birth control because it triggers terrible migraines. I have the migraines that increase your stroke risk, so keeping them away is the key to treating them. What if I have the same reaction to the hormonal replacement therapy they give me – it’s essentially the same stuff right? I can’t do estrogen!

I’m making a list of concerns and questions for my Dr visit. I want this pain to be gone. I want to be able to not look pregnant – right now I’m wearing my husbands shorts! I’m going in there informed and prepared. And I’m not coming out without some answers, that’s for sure.

It hurts, Doc

I’m in pain – been since yesterday – well since, what last week or 2. It’s that darn cyst! I assume.

I haven’t been able to eat or drink much in the past 2 day because I’m like early pregnancy queasy. Yesterday, for the first 3 hours upon waking up I couldn’t keep anything down! Now I just can’t stomach anything. Hubby took me to walk in clinic, and a really nice nurse took me in a room and explained that at walk-in clinic they pretty much have the capacitity to deal with flu’s, coughs, ear infections, and bladder infections, etc. Then she said she would go ahead and test my urine (for free – how nice) to see if it was a bladder infection, or possible kidney infection causing my flank pain. See, around 9 last night I started having nasty sharp pain all along my left side. With heating pad help, I was able to fall asleep. Woke up at one point during the night and thought I was going to vomit. Got back to sleep only to wake up worse off and with that pain still there – and the ovary pain! I barerly scarfed down a small donut so I could take my morning meds, but my beloved morning coffee wasn’t liking me. I took three sips and wasn’t having anymore.

So around 10, after being uncomfortable, I made the hubby cart me to walk-in-clinic. They couldn’t do anything other than dip urine for infection – which at least I know it’s not an infection, which if what I figured I had. I thought maybe I have an infection and that’s what making this cyst hurt so much? But the nurse urged me to go to ER. And I might as the day wears on. I told my husband I will go to ER if A) I start throwing up more (ie. actual food again and not this dry heaving crap) B) the pain gets worse or C) I start running a fever. But until then he took my son to see Star Wars: Clone Wars and my sister took my daughter and I’m going to take a nap. Then if I feel like it, which I better, I need to do some PR homework that I’ve been trying to do for 2 days but can’t seem to focus on—- hmmm I wonder why???

Giving In

I gave in. It hurt too much. I had to.

When the pain reached a 3.5 out of 5 (my doc’s office uses a 5 point pain scale, don’t ask), I knew it was time to call them. I wasn’t expecting a miracle – or even an appointment. It was already 3 and they close at 4. And they were booked and couldn’t get me in but a nurse called me back at 4:30 and advised me with that high of pain I should be in ER. Not going to happen. But she said if I can manage at home over night, if the pain doesn’t intensify, then that’s ok. But if it’s get worse or changes, then go straight to the ER. And I will. I know better. Really, I do. But I will be going in at 9:50 tomorrow morning and have this cyst looked at. This should be fun – not.

Now I’m just trying to get through the night without going to the ER. Wish me luck. I just managed a slice of pizza and hoping it stays down. I’m so queasy and I know if it comes up that’s a sign I need to head to ER. This sucks major time.

Endo hell – continues?

I was in pain all night – again. It began under my rib, and then showed up around my left ovary at the same time.

It’s still there today.

I’ve been living with heat and rest, and trying to cope. It’s taking everything in my will power not to call Dr. Endocrinologist and say “Listen, these aren’t your ovaries, I’m taking them out!”

* I had to edit this to say how much I wanted to elaborate on this but couldn’t because of the junk on my plate right now – which isn’t helping! Unfortunately, I still can’t find the time to elaborate but may later tonight when things have calmed down. Until then, take care everyone in Endo land.

Cyst… I dream of you

It was 3:45 and my daughter was at the edge of my bed: “Mommy, I don’t like my bed.”

Well, I wouldn’t either. It’s a bunk bed with a bunk bed mattress. It’s hard. You’re brother’s in there snoring and the cat wants to sleep on your feet. I understand. Just crawl in bed with me. At this point I don’t care.

But as I try to fall back asleep I realize that I am very, very nauseous. I could vomit, and now I have a kid blocking my easy access to the bathroom. Great. But I’m not sure why I feel so ill since I was perfectly fine when I went to sleep? Then I roll on to my back, to get into a more comfortable position, and it hits – the twinge.

If you get ovarian cysts, then you are surely familiar with “the twinge.” It’s that sudden stabbing pain that takes your breath away. It never last long, but leaves a trail of discomfort in the region. Yes, that “twinge.” I can cope with this while sitting at my desk at 4 in the afternoon or even 9 in the morning, but at 3:45 am when I’m trying to go back to lala land, not too well.

Instead of being lulled back into a nice rhythmic sleep, I laid there for the next hour or so with periodic stabs (in my left side because my right ovary must either be dead or it likes me too much to cause pain), and with this overwhelming feeling that I just needed to vomit. It was terrible. And I didn’t want to vomit – who does after all, but I couldn’t drink anything for another 3 hours because of my desmopressin. I couldn’t even get up to get a heating pad because I didn’t want to risk waking her back up. I was literally stuck between my daughter – who had one of my arms pinned down, and my husband – who was facing the wall totally oblivious that she had even come in there. And there I laid, cursing myself for letting her crawl in bed with me. If I had gotten up and put her back in her own bed, then I could’ve gotten my heating pad from the living room.

Eventually I fell asleep cause my husband woke me up at 7. And I’ve been nauseous all day. The twinges weren’t there this morning – thank goodness – but they’ve since come back this afternoon. Along with a headache and that “oh, I want to throw up” feeling. I tried to eat, thinking it was because I hadn’t eaten lunch, but the few crackers I got down made me feel worse.

I really, really, really, really hate ovarian cysts. And I’m really, really, really mad that I haven’t been cleared for that hysterectomy right now. Although, then I would probab;y just be waking up with hot flashes instead.