November 4, 2011

The Womanly Heartaches of Bleeding, Infertility, and Miscarriages

I've written about the womanly art of bleeding. But what often goes in silence are the pains and heartaches many women experience on a regular basis as their bodies cycle through their periods. The swelling and the cramping, worsened for many by fibroids and uterine thickening, and the emotional effects of the hormone shifts.

And then there's the bleeding women don't want to see when it becomes a message of infertility or the dramatic experience of miscarriage.

Unbeknownst to the public, Anna Arrowsmith, also known as feminist pornographer Anna Span, has endured much of all of this over the years. Suffering on a regular basis from intense period pains and prolonged bleeding as a result of adenomyosis (endometriosis interna), she has over the last three years also gone through the added exaggerated effects of hormone treatments and IVF with its high hopes and wrenching losses. Four IVF cycles, four pregnancies, four successfully detected heartbeats, then no more.

And nobody knew. When Anna was actively campaigning last year as a Liberal Democrat Candidate for Gravesham in Kent, advocating for comprehensive human sexuality education among other issues, nobody knew all that she was suffering off the political scene.

Then after a dramatic conclusion to the fourth pregnancy this fall followed by near fatal illness due to treatments she'd received to keep the pregnancy going (by suppressing her immune system), Anna's husband Tim Arrowsmith last month finally posted about their experiences and they both shared his post on Twitter. 

As Anna commented in her tweet sharing Tim's post, the topic of infertility is still a bit taboo. For that reason, the couple sharing their experiences with it is all the more significant. As Tim writes, his hope is that "some of this may resonate with some of you who have had similar experiences and might promote a bit more open discussion of a taboo subject, even amongst friends."

It's a powerful post, worth a read in its entirety. While heart-wrenching and moving, I in fact also find it quite beautiful: empowering and inspiring as a testimony to their unswerving hope and the strength of their relationship.

"We are all the product of varying degrees of effort to bring about our existence."
By Tim Arrowsmith (published at rollinglow)

In our case we started hearing the word ‘infertility’ about 18 months into the process of what is known as ‘trying for a family’. Luckily our GP was, and continues to be, both sympathetic and ruthlessly efficient at referring us for treatment. If we lived 20 miles away in a different NHS trust, the process that took us a few months would have taken two years or more. Once initial appointments took place and waiting lists were negotiated, we started our first cycle of IVF. The various initial investigations carried out involved numerous scans of Anna, counts of my sperm, lots of form filling, identity checks and a number of blood tests, some to demonstrate we were clear of STIs. The latter was easy, we knew there wouldn’t be any surprises, having carried these tests out early in our relationship – part of us getting serious in our relationship was getting tested. What wasn’t so simple was our medical reviews. By the time we met Anna had already had several gynae operations: a fibroid removed, two ‘drillings’ of her ovaries to clear obstructions and an investigative laparoscopy. I had a reduced sperm count due to illness as a child and for some reason this issue doesn’t seem to interest IVF specialists. One has to wonder if there’s some hidden gender bias at play.

From the outset we were typical candidates for ICSI, a process whereby the ovaries are artificially stimulated, the eggs surgically removed and injected with sperm obtained in a quiet room containing lots of adult magazines (or under sedation if medical problems preclude the DIY option). Forgive the pun but I’m an od hand at this. The regular provision of sperm samples for both counts and IVF itself is something the chaps have to get used to, and compared to the much more uncomfortable and invasive procedures that the women endure, it’s nothing of consequence. That’s easy to write – in practice it always feels odd…. Once the medical team work their magic, the fertilised eggs are allowed to develop in a carefully controlled environment and those that progress to a healthy cluster of cells are assessed at between two and five days, at which point they are placed in the woman’s womb.

The extraction of the eggs is the culmination of several weeks of careful manipulation of a woman’s hormones, first to interrupt ovulation and then to stimulate it at an accelerated rate. During this process Anna’s ovaries swelled to the size of grapefruit as the egg follicles developed. A constant fear is that the ovaries will become overstimulated, a condition which has some rather unpleasant effects on the woman’s health and will usually bring the whole process to an abrupt halt. If that is avoided, extraction is done under sedation. It’s painful; I’ve been in the room twice whilst it was done and Anna unfortunately wasn’t quite asleep during the procedures. She squirmed with pain throughout and I found it unpleasant to watch. Luckily the sedative ensured she remembered nothing.

Once the hurdle of successful fertilisation is overcome and the (hopefully) high number of eggs is converted into a much lower number of ‘blastocysts’, the wait begins to find out if the implanted cluster of cells have gone on to develop in the womb.This starts with the growth of foetus in an egg sac and eventually the detection of a heartbeat at six or seven weeks. Various blood tests along the way confirm a successful pregnancy, some clinics testing hormone levels every two days to check adequate progress is being made.

The euphoria felt when the heartbeat is identified is huge. All the time, effort and money seems justifiable; the process has been a success. In a few months there will be a pram and clothes to buy, a room to decorate. All the usual excitement of a normal pregnancy suddenly arrives to put a highly medicated experience in its shadow. Even the daily progesterone intramuscular injections I had to give Anna with a 40mm needle, with the lumps and bumps they caused on her bum, were all part of keeping the good news coming.

The moment when you are told the heartbeats have disappeared its horrible. The medical staff check and check again and on one occasion we were even sent to another clinic for a more detailed scan. Unfortunately we have been through this more than once. Four IVF cycles, four successfully detected heartbeats. In our four cycles we scored one, one, nil, two.

None got further than the first: ten weeks. The loss of the first one hit us hard and we mourned it by scattering some rose petals in a forest near our home. Undeterred, we spent the next year trying twice more. Once in summer – one heartbeat until seven weeks – once over Christmas – no heartbeat.

During that year Anna was also prescribed a drug called Zoladex. It is used to temporarily reduce the production of oestrogen, a strategy used to control a condition known as adenomyosis. The drug induces an artificial menopause for three months, with all the accompanying emotional highs and lows one might see in the real thing.

Adenomyosis used to be known as endometriosis interna. Endometriosis is the growth of fibroids on the surface tissue of the uterus/womb. As the name suggests endometriosis interna is when the fibroid tissue penetrates and grows within the muscle of the womb. Oestrogen encourages this tissue to grow and during pregnancy the womb expands at an exponential rate. At 10 weeks, Anna’s womb was a size normally seen at 22 weeks. Zoladex can shrink the womb and reduce this effect. Surface fibroids can be easily removed surgically, adenomyosis cannot.

The uterus is a fascinating part of the body. During a woman’s monthly cycle, it provides a safe environment for a foetus to potentially grow, providing it with nutrition via blood. Imagine a sponge, into which many large blood vessels feed blood, building up a rich lining on the walls of the uterus. During menstruation, muscle contractions (known as cramps) close off these blood vessels and the lining is expelled. Soon the process of replacing the lining begins, the blood vessels open up and the cycle repeats. Adenomyosis intervenes in this process, preventing these muscle contractions from achieving the temporary closure of the blood vessels. Blood continues to flow into the womb at elevated rates and pain levels climb exponentially. Anna has only been able to manage this problem with high doses of codeine and anti-inflammatory medication. She usually spends at least 48 hours in bed, immobilised, bleeding heavily. At times the bleeding is continuous lasting months.

Any condition that affects blood flow into the womb will potentially affect the viability of a pregnancy. This is where things get a little more difficult – known causes of adenomyosis are thin on the ground and there is no known treatment. The womb tissue is gradually penetrated and replaced by the fibroids and can spread to surrounding areas like the colon. Of the many surgical procedures Anna has had, the most recent was the removal of two egg-sized areas of her womb, front and back, to reduce its size and improve her chance of a successful pregnancy. Sometimes the adenomyosis is located in specific areas and easier to remove; in Anna’s case it was shown on scans to be present throughout. Once a surgeon starts removing parts of the womb, you start to realise the options are getting fairly limited. More than once in this process the consultant said he’d be recommending a hysterectomy if we weren’t trying for children.

Our most recent ICSI cycle was at a very expensive central London clinic colloquially known as ‘IVF Bootcamp’ to the many women who have enlisted their services, based on the intensive treatment and the highest live-birth success rate of any IVF clinic in the UK. By this time we had exhausted our two free NHS-funded cycles, had paid for one ourselves and had decided to go for one more a a last shot. We attended daily for almost a month; daily blood tests and scans became routine. Hang around the right cafes in Marylebone High Street and you’ll spot lots of women with cotton wool taped onto their arms, all doing the same thing. Hormones are being manipulated, immune system strength determined and various treatments provided to create the highest possible chance of a successful pregnancy.

Immune treatment takes two forms: in the crudest terms, these are weak and cheap, and strong and expensive. The theory is that suppressing a woman’s immune system prevents a rejection of the foetus during the pregnancy. The strength of the immune system’s response is determined by expensive blood tests that are sent to Chicago for analysis (there’s a theme developing here, isn’t there?). We were twice recommended the cheaper option to reduce levels of ‘natural killer cells’ in the womb. The expensive option costs £2,000 and some women receive it monthly throughout a pregnancy.

Our last appointment at this clinic was in September this year, when we were told the two heartbeats visible in previous scans had stopped. Anna remembers feeling subtley different a few days before; less hungry and needing to pee less – the two main symptoms she’d been experiencing for the preceding weeks. Fertility treatment tends to demand that the participants submit to a completely medicalised process – intuition seems to take second place behind endless test results and scans. These are necessary and valid, Anna just felt she knew the result before the Doctors.

The conclusion to an unsucessful pregnancy takes two forms. The more squeamish can look away now. Without medical intervention the sacs and their contents pass out naturally, usually within two weeks. I wouldnt recommend this; it’s an unpleasant enough experience for a partner to observe, never mind the woman. Let’s just say that seing this once was enough for me. The clinical method is termed an Evacuation of Retained Products of Conception, or ERPC. A perfunctory acronym by necessity, it describes an event loaded with emotion. It’s carried out under general anaethestic in hospital with patients usually in and out on the day, at the most 24 hours. When Anna went in for her ERPC, she was nil-by-mouth for 20 hours while she waited for the on-call surgeon to come available. She threatened to discharge herself several times. Eventually she was seen, wheeled away and I began a nervous wait for her to come round after yet another general anaesthetic. She was kept in overnight after the procedure then sent home.

At this stage we were in a fairly heightened emotional state. We’d experienced this stage before but until the last scan in this last IVF cycle we had been achieving perfect test results. We really thought this one was going to go the distance.

Recovery from an ERPC takes some time and we returned home to start dealing with things. A few close friends and family were told (those who already knew what we were up to) and all were incredibly supportive. They deserve our eternal thanks – you know who you are and your kindness and support was overwhelming.

We then learnt what kind of impact immunity treatment can have on the body. Over a period of a week Anna began to feel steadily worse, bleeding much more heavily than expected and showing signs of fever. After a rather terse phonecall on Saturday with a nurse who suggested we go to our GP on Monday, I drove her to the hospital and she was admitted. She was diagnosed with sepsis, given IV antibiotics and over three days was given 4 blood transfusions to treat her for very low haemoglobin levels. Anna’s donated blood in the past, I deliver it to hospitals. She got it all back that day!

I’m very glad she was treated promptly and we didn’t wait until the Monday to see the GP. Medical staff monitored her closely, checking her temperature, pulse, oxygen levels and even urine quantity to monitor her response to the antibiotics and transfusions. We were given various updates, some with two Doctors in the room. When that happens you start to wonder how bad the news is going to be…

She was in for three days, and phrases like “You had us worried for a while” started being used. This was followed by a quick reference to a scan that could have been put a little more delicately: “You shouldn’t be having babies with that womb”. Short and to the point. Anna was discharged with a bag full of strong antibiotics to take every few hours for the next week.

This all happened about a month ago at the time of writing. Anna was very weak for quite a while. Sepsis has a 40% mortality rate and recovery times are long. 10 days after her discharge we cashed in some airmiles gained from using a credit card to pay for the IVF treatment and flew to Cyprus to stay with my family for a couple of weeks. We’d blown all our cash so it was done on the cheap, and most of this was written there.

The sepsis put a lot of what had happened into perspective; wanting a baby is too high a price to pay for messing with Anna’s health. IVF is no longer an option – her womb won’t now support a pregnancy – but we have 3 frozen eggs that may be used for surrogacy if we decide to go in that direction. UK law prevents us from advertising for a surrogate and only reasonable expenses can be paid. Those that go abroad encounter a long list of potential risks and expense, sometimes resulting in border authorities preventing a child from returning to the UK with parents.

Adoption is another possibility we might consider in time. We don’t yet know if Anna’s career will cause problems with this but time will tell. The legal and procedural hoops that prospective parents, local authorities and courts have to jump through mean that many children spend longer in temporary care than I believe is necessary. The Guardian has published articles on this and it was mentioned at the recent Conservative party conference as something the Coalition government hope to change.

We’re having a bt of time out to restore some normality back into our lives. We’ve spent three years on this ‘project’ and now feel we owe ourselves a little fun. We have some places we would like to visit and some people we need to catch up with. I fear we may have neglected some friends and family since 2008 and occasionally some may have found us a little short-tempered or just a bit stressed. My hope is that this chronicle of our journey serves as both explanation and apology.

I also hope you don’t find it too self-indulgent – I know friends have been through just as much as we have, in some cases much more, and not felt the need to tell all and sundry about it. My hope is that some of this may resonate with some of you who have had similar experiences and might promote a bit more open discussion of a taboo subject, even amongst friends.

Anna has recovered well but the emotional legacy will probably stay with us for a while. The next challenge is a hysterectomy, which Anna wants to have as soon as possible. That’s pretty final, but she’s had enough of the pain, so out it comes!

Both our parents have helped us through some tough times when they probably have enough going on in their own lives to worry about. To them, lots of you and especially my wonderful, resilient wife, thank you.


p.s. Now you know the real reason why we gave up drinking three years ago – Chin chin!!

Anna and Tim enjoying their first glass of wine in 3 1/2 years (Oct. 28, 2011)

In a welcome move, the women's magazine REDBOOK also confronts the taboos of infertility in this month's issue in an article titled "The invisible pain of infertility." Together with RESOLVE, The National Infertility Association, REDBOOK has also launched "The Truth About Trying: Infertility Stories From Celebrities and Women Like You," an online video campaign to fight the taboos and silencing of infertility, and promote an open conversation about infertility, which strikes one in eight women in the United States.


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