March 13, 2007

The Infertile Dummies Guide to OHSS

Well, after much discussion about how much out there is really not known by my fellow infertiles about OHSS, I decided to create this post. I got no help from the medical community when it came to intense terror that I felt when I was diagnosed with OHSS, all I got was you will get better. It really seems that unless and RE has actually gone through it then they just have medical literature to go on when telling you what you will experience. I have thought about this a lot over the last few sleepless nights, and decided that we need a "Dummies" guide to OHSS, so here is my attempt at.......

"The Infertile Dummies Guide To OHSS"

The way this will be written is the "Medical" description, and then mine.....

Welcome to this addition in the "Dummies" series... today you will learn about what OHSS is, and what happens to your already jacked up body when you get it.

So, you have come to that point in your journey where you have attained the shear joy of stabbing yourself with needles on a daily basis chasing that very elusive object.... A Baby. The drugs are a fun little mixture to make your ovaries give up the eggs, but they can also wreak a lot of havoc on your body as a whole... Having fun yet?? Aside from the normal side effects of doing an injectables cycle which include but are not limited to: Nausea, diarrhea, headaches, general bitchiness, being tired non stop, and the inevitable anxiety attacks. There are also now in the mix almost daily trips to the RE for Bloodwork, and Wandings (My favorite by far) and if the office is far you will be forced to get up at the ass crack of dawn just to get there before all the other infertiles sharing this wonderful event with you. We all know the early bird gets the worm!! You will also be told that you have a new thing to look out for, as if there isn't enough already on your plate, called OHSS. The medical community will tell you that your risk is slight, 1-2% per medicated cycle, well I say they are way off on that estimate!! There are 3 stages of this wonderful little side effect the first of which is:


Symptoms include:

1. Abdominal bloating and feeling of fullness: Yeah most of us have this issue with all of our cycles right, so it is just mild right now.
2. Nausea: Most if not all of the drugs can contribute to this fee, but then so can bad fish... but it is still mild.
3. Diarrhea: Well hell most of us on Metformin have this all the time anyway, so your drugs are causing this to.... still mild.
4. Slight weight gain: Ok, is it just me, or does this Mildness sound like a pretty normal cycle all the way around?? I know for me it does, but then I have never had a normal cycle in my life, so I am just guessing here.

Recommendations at this level for relief of symptoms include:

1. Avoid sexual intercourse- I don't think that I needed to be told that one, but boy DH sure does!!
2. Do not have a vaginal (pelvic) exam other than by one of our physicians: Uh so the 3 wandings a week that I am already having isn't enough and you think I want to sign up for more? Yeah right!!
3. Reduce activities, no heavy lifting, straining or exercise: Makes sense... I didn't do it before this cycle so why start now??
4. Drink clear fluids, flat coke, ginger ale, cranberry juice, Gatorade or Ensure. I already did this one just because that is part of my "Living healthy to have a baby" plan.

So now you might have noticed that we are working in stages here so on to the next one...

Moderate OHSS

Symptoms include:

1. Weight gain of greater than 2 lbs. per day (excessive weight gain)- Here is where the fun starts. I have a real issues with gaining any freaking weight period!! You will think that you had to have gotten up and eaten half of the fridge the night before.
2. Increased abdominal measurement causing clothes to feel tight- Uh yeah that goes right along with the weight gain.... you will start to look like you ate to well at the buffet last night!!
3. Vomiting & diarrhea- Always a joy to stand at the toilet and worry about which end you need to hover over the seat... but it usually doesn't matter as if it comes out one end the chance is there that it will also come out the other end as you retch you brains out.
4. Urine is darker and amount is less- Yeah, this can be an issue with the amount of fluids you are already trying to keep down, so you put them in, but they don't come out.... interesting.
5. Skin/hair may feel dry- I personally didn't have this issue, but I know people who have and they warned me that it feels like you rolled in poison ivy.
6. Thirst- Yeah, I am trying to put as much in my mouth as I can, but I still feel like my mouth is a parched desert, no fun, esp. when to hot or to cold will upset that already pissed of stomach of yours.

So, you have now reached a level where things start to get a little more serious, so if you have any of the above symptoms, I highly recommend you start bugging the hell out of the RE's staff...

1. You may need to be seen by a physician who will do an ultrasound- Ack yet more ultrasounds are you kidding??
2. Record your weight twice daily- Yeah I am loving all this weight shit they are tossing at me!!
3. Record the number of times you urinate each day- That is if you can even go!! Short list for me!!
4. Contact your RE's office if you note a five pound weight gain over the previous 24 hours, note a drop in the frequency of urination (~50%), or increasing pelvic pain. Now this is where the real fun starts... pelvic pain... Uh yeah because by now your ovaries are the size of little oranges, so there will be more then a little discomfort, in fact you will feel like someone put a bowling ball in your pelvis and told you not to move it. You had better start scouting your not so thin friends out for clothes, or succumb to wearing sweat pants for the next week or so.

Reasons for these symptoms include:

2. High levels of hormones in the bloodstream upset the digestive system. No SHIT
3. Fluid imbalance causes dehydration because body fluids collect in the abdomen and other tissues. This fluid collection causes severe bloating. As I said above, get ready for your sweats!!!

So now you have hit the big time, you have been diagnosed with Severe OHSS, oh the fun you are having....

Severe OHSS

Symptoms Include:

1. Fullness/bloating up above the belly button- Fullness is not the word I have for it, my word is damn I look freaking pregnant, and not just a little, but A LOT!!! 7 months pregnant as what I looked like, but it was odd, because it was only from the belly button up... how odd looking it was naked, but with clothes on I really looked very pregnant.
2. Shortness of breath- Yeah you will have problems breathing because your ovaries are now the size of grapefruits, and they are jamming every other organ you own right up in to your chest cavity... Slow deep breaths feel like hell, but hey a girl has to breathe right??!!
3. Urination has reduced or stopped and become darker- Yeah, hang up your list because you will now feel like someone stuffed a cork up your urinary track, and even if you didn't constantly feel like you had to pee, you start to think you may never actually urinate again. Oh yeah and actually doing so gives you little to no freaking relief... I highly recommend investing in some Poise pads at this point, because every little movement seems to squeeze the tiny bit of urine in your bladder right out!!
4. Calf pains and chest pains- I didn't have the calf pains, but to say that the chest pains felt like an elephant was sitting on top me is an understatement!! The only way to relive this problem was to lay in my recliner and lay back to try to take some of the pressure off my poor lungs and ribs by giving them a little more room.... I thought about what I could tell you that would make you relate to this one, and I came up with this: you all know the scene from Aliens where the guy is laid out on the table, and the alien is busting out of the guys chest, yeah well that is it, my ribs felt like there was an alien under them trying to bust out!!
5. Marked abdominal bloating or distention- Uh yeah, I think that we have been over this... your skin will actually start to hurt the bigger that you get. Eating becomes a fun little chore that you will have to endure. Due to everything pushing upwards, it will be very hard for you to even eat a normal sized meal, hell I was pureeing chicken noodle soup so that I could drink it and keep it down!!
6. Lower abdominal pain- Gee you think?? I was so sure that my uterus was trying to crawl out of my vagina that I actually had to look twice. They tell me that it is normal to experience this pain, and I got good drugs, but let me tell you one thing they don't warn you about.... Depending on how your retrieval is done, I am sure most are vaginally now, mine was, you will literally feel like you are trying to crap razor blades every time you try to pass gas or engage in the ever so elusive bowel movement. I have to assume that this is due to all of the swelling and discomfort from your swollen ovaries trying to push everything else in your pelvis out of their way. At first I thought that this pain was in my colon, but now I realize that it had to have been where my vagina was sore from the humongous needle they used to aspirate my follicles... but it really does feel like you are trying to shit razor blades I SWEAR!!!

Reasons for the above symptoms include:

1. Extremely large ovaries- Really??? I never would have noticed if you hadn't mentioned it to me!! Hell I feel like I have cantalopes for ovaries, so I guess they are extremely large!!!
2. Fluid collects in lungs and/or abdominal cavity, as well as in tissues- This is where you start freaking about the weight gain... I gained 20 pounds in 3-4 days. At this point you will start getting dirty looks from your fellow infertiles when they see you in the waiting room, as I am sure they are wondering why your very pregnant looking ass is sitting in their waiting room, reminding them of their reason for being there, and you will want to jump up and scream at the top of your lungs that you not in fact pregnant as far as you know and that they should live in the hell you are going through!!!

Possible solutions to the above:

1. You may need to be assessed at the hospital - Hmmm you think?? By this point your blood pressure can be pretty high, and you might start feeling very lightheaded every time that you sit up to fast.
2. Excess fluid may need to be removed from your abdominal cavity- I didn't quite make it to this, but I begged for it honestly. I had heard that you feel instantly better when they drain you, and that is all I was after... Instant gratification.

Now you have hit the big time, and you are really feeling like hell and praying to the powers that be that you will NEVER piss them off and do another IVF/Medicated cycle as long as you live!! I will tell you now the one thing that I swore if it got said to me one more time that I would punch the doctor in the face..... You Will Get Better. I cannot tell you how sick I got of that phrase being tossed at me every other day for 2 weeks, but it does turn a corner, and you will start getting better!! When my fluid started to get back into my blood stream, it all went to my legs... in fact all 20 pounds were in my legs, and that scared the living hell out of me. My ankles disappeared, my toes looked like little sausages, and it hurt to walk or even move. The best thing that you can do is rest and put your feet up to get the fluid out of them. When you finally start to pee again, you are getting better, and trust me pee you will. I lost 20 pounds in 2 days.
If your period starts, you will likely begin to feel better. Pregnancy may prolong or exaggerate these side effects. I can tell you that the fact that I could have gotten worse had I gotten pregnant actually made me happy on some levels that I hadn't... OK well that isn't entirely true, but I couldn't imagine going on with the hell I was in for up to 12 weeks!! I would have lost my damn mind!!

Granted, I pray that none of you ever have to experience this OHSS Beast, but if you do may you now be better prepared for what is coming your way!!


Samantha said...

Hey, I've been there, and I'm going there again! The description from your RE's office looked strangely identicial to the one given to me... I wonder there is just the "OHSS sheet" that every clinic uses.

Bea said...

It all sounds so familiar! I got a urinary catheter as well as the paracentesis tube and intranasal oxygen. It was fun! And I went back for a second retrieval, too, but we halved the doses and it didn't happen again.


kate said...

I came over from Creme de la Creme. What an entertaining post! It's weird, but I think I have most of the symptoms of mild OHSS every single month! Of course, you totally cracked me up with the if-you've-been-on-metformin-then-you-know-ALL-ABOUT-the-diarrhea thing! Very funny.
Thanks for sharing.

Kathy V said...

I came via the creme list. The way you wrote this makes me ant to take every informational medical brocure and rewrite it to tell people what they will really experience. Thanks for sharing this post on the creme list.

Anonymous said...

been.. there .. done that ... and it was HELL. thank you so much for this blog. i realy dont know if i was mild, moderate or severe but i was in hospital and i had fluid in my abdomen and lungs. thankfully i did not gain too much weight and they did not have to take the fluid away. But it was HELL and i did not get pregnant. I DONT CARE (or may be i do.. i dont know) but i WILL NEVER to another IVF and i am not going to think about babys. it's a month from after all this hell happened and i am OK - no pain but still have discomfort in the stomach sometimes. CRAZY ...... thank you for letting me share my frustration....

Anonymous said...

Got diagnosed with moderate OHSS. Been trawling the web to hoover up every scrap of info that I can find about it. Almost fell off my chair laughing whilst reading your post. It is hilarious. Thanks so much.

As I was trying to convince my doctor to do some more tests I got fed the classic line "this isn't the worst case of OHSS I have seen". Great. So, are we going to do nothing until it does become the worst case, and then take some action. I guess there isn't much they can do but it didn't stop me wanting to punch her - this was the same doctor who told me a few days before that there wasn't risk of OHSS and that she wouldn't tell me any more about it because I didn't need to know (I already had OHSS symptoms at that point).

Regina said...

Thanks for this post. I ended up on your blog via a google search of pain above belly button following fertility shots.
I was at the RE's office today to have an ultrasound, blood work and an exam. I have pain above my belly button, which feels like a knot and have a lot of pressure in my chest. They said that my ovaries are enlarged, but no larger than they expected from being stimulated with Follistim. My cycle was canceled last Friday because of an ever increasing Estrogen level of 2770. My RE was not available, so I saw another and he said that he doesn't think that I have OHSS. My question is..can you have a mild cause and have them not diagnose it as such? Like you mentioned, they seem to be rather relaxed about OHSS because they are not experiencing the nagging pain. He said that it may not be related to the Follistim at all and to see my primary care doctor if I still have pain. I'm so confused because I seem to have a combination of the symptoms of varying degrees of OHSS.

Meesh said...

Thank you so much for this post! I have been through the worse hell I could possbily imagine and my husband keeps telling me, "Are you sure it's not in your head?"

I just recently got home from a week long trip from the hospital. I was vomiting for 2 days straight and could not breath-- they mistook it as allergies-- my primary sent me to the OR, where that hospital did not have too much exposure to OHSS. Low and behold, I got about 4 liters removed from my belly, 1 from my lungs and a chest tube inserted because the fluid came back. Oh and it's also returned to my belly.

I soon transfered to a hospital closer to my RE, where this is "all normal." puh! They sent me home because all I can do at this point is just "manage" the symptoms of, well, you know a "7 month" belly, abdominal pain, unable to bend over or eat fully, that kind of stuff. My ankles have swollen now, so that got me really worried. But I will not be pushed around, I'm going to get through this. I am almost 3 weeks pregnant and I am determined to think about my new baby! I'm just so glad i'm not the only one in this world!

Anonymous said...

Wow! I cannot tell you how much I needed to read this post!!! I wish I wouldve found it WEEKS ago. I went through a horrid case of OHSS and kept hearing "it will get better". Aahhhh I wanted to scream. Even now however I did get pregnant on our first ivf cycle I am currently 10 weeks and although I feel better I still have pains from my ovaries being enlarged and a little bloating in my lower abdomen. So I assume I have a couple weeks to go before feeling normal again. Thank you for your post!!!! It was hilarious! Everything you said I was feeling! Good luck to everyone!

Anonymous said...

Thanks 4 the info! I'm happy to read that I'm not alone, as I'm currently experiencing a moderate/severe case of OHSS! I'm in my 2nd week of pain and feel bad even conmplaining, cuz after all I did get myself into this situation. I'm just wondering if light exercise helps relieve symptoms(given lots of water replacement afterwards)? I'm patiently waiting 4 my pregnancy test in 3 days...if positive, how long do the symptoms stick around? I've heard like 10-12 weeks!!
Hanging in there. Thanks ladies.

Anonymous said...

On day 8 of OHSS. They canceled my embryo transfer so that I can recover from being hyperstimulated before trying to get pregnant. My case of OHSS has been borderline severe. I have been drained twice now. On day 6 they took four liters of fluid out of my abdominal cavity at the outpatient clinic. This was a huge relief, and I encourage anyone with severe bloating and discomfort breathing to explore this option. I was also given a list of high-potassium foods to avoid and told to eat a high protein diet and drink lots of Gatorade. I usually find Gatorade undrinkable, but while recovering from OHSS, it has actually tasted good (esp. the Lemonade flavor). It was the only thing I could drink for the first six days. Doctor says I'm doing great. I put on 15 lbs. of fluid, but they did not have to hospitalize me because my electrolyte balance has been good. Main thing is REST and then move around minimally so you keep your circulation going. I walked around the block at a snail's pace each evening. Be sure to bring a friend along to lean on as walking is very very painful when your ovaries are 9 cm in diameter and your belly is distended from fluid.

Roberta said...

I am suffering through OHSS right now waiting my pregnancy test on Nov 15. I had 42 folicles and they transfered 2 day 3 embryos upon my insistance although they warned me that his could happen. None of my clothes fit and I am just hoping that it is all woth it and I finally get a positive test which will make this all worthwhile. It's nice to know that although what I'm going through is miserable I'm not alone.