Our blogging friend EndoJourney, who has posted with us before, is sharing some very important information about her journery with OHSS. This is not to substitue for medical information or treatment, but is just her experience and her story that she wants to share with you.
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Ok so I’m not actually an expert on this by any means but I found while going through it that there is hardly any information or stories out there about severe OHSS. This makes sense considering only 1-2% of pregnancies have any kind of OHSS and 1% of those are severe or worse. So with that, I figured I’d consolidate my story and the things I learned about it and from it to share with others. I hope no one ever has to go through this but in case they do, I hope my story can help.
OHSS (Ovarian Hyperstimulation Syndrome) is a complication of fertility treatment that involve stimulating your ovaries and there are 4 levels: mild, moderate, severe and critical. After egg retrieval, the space where the follicles were retrieved fills up with fluid and become luteinized, causing the ovaries to enlarge slightly. This happens to everyone so everyone is at risk for mild symptoms. What separates the mild/moderate from severe/critical is that in the latter the blood vessels in and around the ovaries become “leaky”, called vascular hyperpermeability causing the fluid from the blood to build up in the abdominal cavity.
If there is no pregnancy, the symptoms should resolve on their own in 1-2 weeks with relief beginning once the hcG trigger shot begins leaving the body. If there is a pregnancy, the hcG produced by the pregnancy causes extensive luteinization of the ovary to produce enough hormones for implantation and sustaining the pregnancy until the placenta develops. This results in the “second wave” of symptoms after implantation. If it is mild/moderate and there is a pregnancy, the symptoms might remain for another week or so longer. For severe cases, the symptoms should not last beyond the first 13 weeks of pregnancy because once the placenta kicks in the ovaries slowly start shutting down. Some people do not experience any symptoms immediately after egg retrieval but only notice them after transfer or after a confirmed pregnancy. This is called “late onset” OHSS.
They don’t know much about OHSS at all, especially the severe/critical kind. At all. But there seems to be some correlation with developing OHSS and:
- being underweight/thin
- using hcG trigger shot (vs. Lupron)
- being under 35
- producing lots of follicles
- high estradiol levels
- PCOS or polycystic-type ovaries
My Timeline – Quick Version (more details here)
- 5/5 – Egg retrieval (27 eggs); given He.span during procedure to prevent OHSS; told to begin no water, high protein/sodium diet
- 5/6 – begin bloating, distention, fullness after less than normal sized meal, belching
- 5/7 – begin shortness of breath and difficulty breathing
- 5/8 – transfer 1 embryo; can fit into endo clothes, nothing smaller
- 5/12 – officially diagnosed with OHSS, no longer fitting into any pants and shirts can’t fit over my belly
- 5/13-25 – eating less than 500 calories per day, some days no food at all because stomach is too small to fit food and Gatorade
- 5/15 – obvious decrease in urine output
- 5/16 - paracentesis #1 – removed 2.5L fluid; RE tells us I’m pregnant; begin checking urine output
- 5/17 – IV fluids given at urgent care; nausea and vomiting begin; urine output <50mL/hour
- 5/18 – paracentesis #2 – removed 3L of fluid; admitted to hospital for severe dehydration
- 5/18-5/20 – in hospital; given 2 bags of NaCl, 1 bag of Hes.pan and 2 bags of Albumin all weekend
- 5/22 – IV fluids given at urgent care; paracentesis #3 at ER – removed 2.5 L of fluid
- 5/30 – paracentesis #4 – removed 3L of fluid; appetite finally returned more consistently
- 6/19 – had official “Pee Day”
- 6/19-?? – losing fluid from pelvic cavity; belly becoming smaller every single day
- Weight gain. Because we knew that OHSS was a risk, I read up on it a ton before retrieval. The number one symptom that I found and they told me about after retrieval was rapid weight gain. Though I gained almost 20 pounds total from the start, I did not gain it super fast. I think because I’m short and have a very small torso, the fluid accumulation created symptoms much earlier than if I were taller and was just monitoring my weight.
- Abdominal distention. My number one and most obvious symptom was how gigantic my belly got. By 4 days post transfer, I could not fit into any of my pants or shirts and I looked about 5 months pregnant. At my worst, I looked 8+ months pregnant. I could not see my feet from about 5/12 to end of June. To give you another idea, we were “measuring” my waist based on Hubs’ belt. He is a men’s medium and at my worst, I could wear the belt at the 5th hole.
- Back pain. Because of the distention and how tight my skin was, I was hunched over like Quasimodo from 5/9-ish until about 6/27. I couldn’t stand up 100% straight without feeling tightness in my skin until the beginning of July.
- Ovarian pain. My ovaries hurt almost 100x worse than they did on stims. They were so sore and would hurt if I made any sudden movements or if I got up from sitting and they had to readjust. The were significantly larger than normal sized ovaries (no measurements during the peak because it was the least of anyone’s concerns I guess) and were right underneath my skin so I could feel them if I touched my belly.
- Pelvic pain/cramping. Because there was so much fluid, it irritated my organs and pelvic cavity. So I would experience lots of generalized pelvic pain that I recognized felt exactly like when my ectopic ruptured. Only then, blood was the irritant and now it was the ascites. My uterus would cramp pretty regulary and overall my whole pelvic area would feel like it was on fire because it was so irritated.
- Skin pain. My skin had reached its max on how far it could stretch without tearing. In fact, if I had not had paracentesis #3, it would have torn. It is very painful when the skin is stretched that far. It made the skin very sensitive and would hurt if I touched it. Showers were painful. My skin was also pulled so tight that higher up, right below my bra line, the skin would hurt if I tried to stand up straighter than I could.
- Shortness of breath/Diaphragm Pain. I have asthma and food allergies so I am familiar with not being able to breathe. But both of those feel like my lungs are getting tight. This felt more like something was squishing my diaphragm and it could not drop low enough for me to get a full breath. I couldn’t get a full, deep, satisfying breath from about 5/10-6/20ish. My diaphragm would also hurt from the pressure, as would my ribs, especially on the right side right below the bra line. Because of this I would have to sleep sitting up from 5/10-6/2 but at it’s worst I would still wake up in the middle of the night gasping for air. Sneezing, coughing and laughing without pain were not possible from 5/10 to early June.
- Dehydration. This is one of the scariest symptoms of severe OHSS because this is the reason OHSS can be fatal. So much fluid had come into my pelvis that my blood had become extremely thick. My hematocrit levels were scary high meaning when they needed to take blood from me, they needed a syringe to pull it out of my vein and then put it into the vials. It would not flow freely. This also caused my kidney levels and my liver levels to be very scary and affected my heart by dropping my BP to about 75/50 and my resting heart rate shot up to about 100bpm. My sodium, potassium, CO2 and protein levels were also scary low and my white blood cell count was scary high (normal is 4-11, mine was 22). This was the case from 5/12 to 6/12 at which time everything had resolved except for my blood albumin levels. Dr. D believed once I began eating regularly again my albumin levels would readjust automatically.
- Decreased urine output. Due to the dehydration, your body does not have enough fluids to go through the kidneys to filter and let out. This is why the kidneys start feeling extra pressure and why people withe severe/critical OHSS can experience renal failure. Generally 50 ccs/hour is normal and what to expect on average. At my worst I was producing less than 20 ccs/hour. That was very dangerous.
- Nausea/vomiting. Also a sign of dehydration is nausea and vomiting. Since I still had not comprehended or believed that I was pregnant, I didn’t have anything else to attribute it to. I was nauseated from about 5/14 until 5/22 and vomited the night before I was hospitalized. I remember we called Dr. J late that night after I threw up and she sounded very worried. She urged me to come in the next day for another draining and then said that if the nausea wasn’t better she would admit me to the hospital immediately after.
- Dark urine. You know some days you just drink less water and your pee is dark? That color was light compared to what I was seeing. It was a color I had never ever seen before because I was SO dehydrated.
- Belching. Starting immediately after egg retrieval, I burped so much I could have put a 300 pound beer drinker to shame. I have no idea why it happens and haven’t read anything about the cause but seems like a few people with moderate/severe OHSS have reported similar things. It became better as soon as I started peeing.
- Swelling. I wish someone had warned me about this so I wouldn’t have panicked. Not only does your belly get huge, but around 5/19 – 6/5ish everything below my belly was swollen too from the fluid accumulation. And I mean everything. The lady parts, my thighs, my calves, ankles and feet. My feet weren’t too bad but definitely my thighs had grown about 2-3 inches in girth.
- Unfortunately there is not much anyone can do with regards to treatment to cure it. It is purely symptom management until your period comes or until the placenta kicks in and the ovaries start shutting down. Here were the things I was told to do:
- Drink only sports drinks or drinks with electrolytes and salt. The drinks replenish the electrolytes that are just sitting in my belly and no longer flowing around in my blood and the salt is to help pull fluid back into the vascular system. Drinks without salt will only add to the ascites in the belly. I had 100 20 oz bottles of Gat.orade, plus 5 Gat.orade Recovers and 6-7 of the giant 50 oz bottles in 6.5 weeks. A vegetable juice like V8 (normal not low sodium) is also a good way to go to get your salt.
- Eat a high salt/high protein diet. This is with the same concept that we want to pull the fluid back into the vascular system and both salt and protein function in the same way. Remember osmosis from high school biology? The water goes where the salt is? That.
- Drink whey protein. This one killed me because there is no protein drink that I could find without soy and I’m allergic to soy. So I will always wonder if this would have not gotten as bad as it did if I could drink it. But this is even better than the sports drinks. Towards the end we found Gat.orade Recover which has electrolytes and whey protein. It is disgusting but served the purpose.
- Do NOT drink plain water. It just flows from your stomach through your vascular system straight into your belly. Does nothing else for you!
- Avoid fruits and veggies that are high in water content. For the same reason as above. Honestly, your stomach is so squashed from the fluid that if you have limited space and you must consume certain things, things like fruits and veggies automatically stop being a priority.
- Do not exercise, make jerky movements or twist. When your ovaries are that big you are at high risk for ovarian torsion because your ovaries are just floating around in fluid. Just stay put! Not that you’ll feel like exercising anyway.
Beyond that there’s nothing anyone can do. If you were normally dehydrated, they would pump you full of IV fluids until you were re-hydrated and life would be grand. But because of the vascular hyperpermeability, any IV fluid they give you is going to increase your belly fluid. So for me, though I was in the hospital, it was mostly for making sure my organs didn’t stop working and someone was checking on me regularly. But I hardly had any IVs for this reason. They had to carefully balance how much I needed to jump start my organs again vs. how much was too much for my belly.
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Be sure to come back on Tuesday to hear how she dealt with the emotional side of OHSS and some very important tips to get through a difficult time.