IVF babble founder Sara Marshall-Page survived the ordeal and offers this advice on OHSS
“I can’t walk, I can’t sit up on my own, and I can’t even go to the loo on my own. I look six months pregnant and my legs are starting to swell…”
These are words from my diary about two weeks after my embryos were put back inside me after IVF.
My diary continues: “The pain is excruciating. Nights are the worst – at about 11pm. That’s because I know I have eight long hours of pain and insomnia ahead. My body is so swollen I can’t lie down. Haven’t I been through enough pain already?”
I didn’t know it at the time, but I was suffering from severe OHSS (ovarian hyper-stimulation syndrome). It was so bad I ended up in hospital.
Who can you turn to for help?
I knew nothing about OHSS when it hit me. As I trawled the internet, I desperately searched for a few comforting words from a woman who’d been through it before. I just wanted to know when the pain would go away or at least subside so I could get some sleep. I wanted to hear how she coped. I wanted to know that someone knew how I felt.
All I found were pages and pages of undecipherable medical jargon. There didn’t seem to be any clear guidance on OHSS in straightforward language that could explain what was happening to me.
So, here’s IVF babble’s no-nonsense guide to OHSS that we hope will tell you what you need to know.
So just what is OHSS?
OHSS stands for ovarian hyper stimulation syndrome. It’s a side effect from the fertility drugs used in IVF that can develop several days after egg retrieval, or in very early pregnancy.
Drugs are used to stimulate egg production and in some women, this can cause the ovaries to go into overdrive and produce too many egg sacs (follicles).
When this happens, the over-stimulated ovaries swell up and release oestrogen-rich chemicals into the bloodstream and this leaks into your body. The fluid can enter your abdomen and, in severe cases, into the space around the heart and lungs. OHSS can affect the kidneys and liver, too. Egg quality may be affected.
A serious, but rare, complication is a blood clot (thrombosis) or even death if left untreated. The good news is that most women with OHSS have mild symptoms (pain, diarrhoea, nausea, headache and hot flushes) and can be treated easily.
Who is most at risk?
The risk of OHSS is increased in women who:
- have polycystic ovaries
- have had OHSS previously
- get pregnant, particularly if this is a multiple pregnancy (twins or more)
What are the symptoms?
Symptoms of OHSS depend on the level of severity – it can be mild, moderate or severe.
- Very common and occurs in about one on three IVF cycles
- Mild to moderate abdominal pain may come and go
- Abdominal bloating or increased waist size
- Tenderness in and around the ovaries
- Similar symptoms as mild OHSS but the swelling and bloating is worse because fluid is building up in the abdomen
- Abdominal pain and vomiting
Only about one to two percent of women undergoing ovarian stimulation suffer severe OHSS, some of the symptoms are listed below.
- Extreme thirst and dehydration
- Breathing may be difficult because of build-up of fluid in the chest
- Rapid weight gain — it could be five pounds in a day or ten pounds in three days or more
- Severe abdominal pain
- Severe, persistent nausea and vomiting
- Decreased urination
- Urine is dark
- Tummy is tight or enlarged
No treatment can stop OHSS, but treatment can help ease symptoms and prevent problems. It will get better with time.
Mild and moderate OHSS
- Usually needs observation and an exam by the doctor, ultrasound evaluation, and sometimes blood tests
- Drink clear fluids at regular intervals, but don’t drink to excess (not just water, try sports drinks, too)
- Take ordinary paracetamol or codeine for pain (no more than the maximum dose)
- Avoid anti-inflammatory drugs (aspirin or aspirin-like drugs such as ibuprofen), which can affect how the kidneys work
- Even if you feel tired, make sure you continue to move your legs
- You may need to stay in hospital for a few days
- If your abdomen is tense and swollen you may be offered a ‘paracentesisa’: a thin needle or tube is inserted into the abdomen to remove excess fluid
- Your specialist may recommend freezing your embryos until OHSS clears up
How long does OHSS last?
Most of your symptoms should ease in a few days. If you have mild OHSS, you can be looked after at home. If you don’t become pregnant after fertility treatment, OHSS will get better by the time your period comes. If you become pregnant, OHSS can get worse and last up to a few weeks or longer. Stay in touch with your doctor if you have OHSS and tell them if you develop new symptoms. Be aware that you can get better, then worse.
How can you avoid OHSS?
To avoid OHSS without compromising the outcome of IVF is still a challenge. Doctors can help to detect women who are at risk of OHSS before ovarian stimulation starts.
Do the right tests and scans before IVF
- Have a transvaginal scan just before treatment so your clinic can check your ovaries and look for any cysts
- If you have ovarian cysts, they may go away on their own, but keep go back for an ultrasound several weeks later to make sure
- Get a blood hormone test to detect if you have PCOS (women with PCOS have a higher risk of developing OHSS)
- Ultrasound scans can highlight if there are a large number of growing follicles in the ovaries – there’s a fine line between a high number of follicles and risk for OHSS
Check your medication
- Ask the clinic about the medication they use for ovarian stimulation and the doses they use
- Clinics usually base the dose of gonadotropin you receive on your medical history, results of ultrasound, and your previous response (if relevant) to fertility medications
- If you are worried that the dose of gonatrophins is too high, get a second opinion from another specialist
- It may be wiser to start off with a lower dose and see if this stimulates your ovaries and adjust it accordingly
Delay egg retrieval
You can develop OHSS immediately after your eggs are taken. This is because the empty follicles (from where they retrieved the eggs) fill with fluid. This causes the ovaries to swell (they are already swollen) and the pain starts. Fluid leaks from your ovaries, creating discomfort and bloating.
If tests show that you have too many follicles, delaying egg retrieval can lower the risk of OHSS. The clinic may stop your medication and trigger shot for a few days (known as ‘coasting’). Blood tests should be taken regularly to check your level of oestrogen. Once it has fallen to an acceptable level, ovarian stimulation can start again.
Alternative trigger shots
OHSS tends to happen after the trigger shot. Sometimes, depending on circumstances, a clinic will recommend an alternative to gonatrophin medication (known as hCG) as a trigger shot. Women prone to PCOS or OHSS can be given a natural hormone called kisspeptin.
Mild stimulation IVF is an option where a woman is given a lower dose of fertility drugs (called a GnRH agonist, such as Lupron ) over a shorter period of time than with conventional IVF – five to nine days rather than the standard four to six weeks.
Are milder IVF methods as successful as conventional IVF?
Drug-free in vitro maturation (IVM)
Similar to IVF but the eggs are matured in the laboratory, not in the ovaries. This requires less medication for a shorter period of time, reducing the risk of OHSS. Eggs are fertilised in the lab and allowed to develop for three to five days, then transferred back into the uterus. Success rates are similar to traditional IVF.
Freezing your eggs
You can develop OHSS immediately after your eggs are taken, so if you freeze them you can postpone the transfer and help to prevent OHSS. When ready, you can have a frozen embryo transfer (FET). The chances of success are lower than normal IVF but then you reduce your chances of getting OHSS. Not all embryos are suitable for freezing. All embryos must make it to blastocyst (day 5) to be frozen.
Is your clinic your best choice?
Ask your clinic about how they deal with women who have OHSS. If you’re not convinced about their approach, find a better clinic for you.
I hope this is helpful. Fact is, I was not prepared for OHSS and I doubt that many women are. OHSS was horrible, but fortunately it can be treated.
IVF is tough enough without OHSS, so do talk to your doctor before IVF treatment and get yourself thoroughly checked out. It could be a life saver.