Carol ' Interview 08

Age at interview: 39

Age at diagnosis: 27

Brief Outline: Carol had been trying to start a family for 8 years, and had been through 5 cycles of IVF, without success.

Background: Carol is a marketing manager living with her husband. Ethic background' White British.

More about me...

Carol and her husband assumed that they would be able to start a family easily, although she suspected they might have problems as she had polycystic ovarian syndrome (PCOS) and suffered irregular periods when she was younger. She was diagnosed with PCOS at the age of 27 but the GP did not warn her that this could have consequences for her fertility. Carol also discovered that she had endometriosis. She and her husband started their treatment with Clomid, and then two cycles of IUI, which Carol found very stressful. Early investigations also showed up that she had a bicornuate uterus, which was a blow but did not mean she could not carry a child. She was recommended to start IVF and at the time of the interview she had been through five cycles of IVF, which had not been successful.  They were considering using up some of their frozen embryos, and possibly exploring donor embryos before giving up on treatment. At the time of the interview she was not ready to give up on the hope of experiencing motherhood, and giving birth.

Carol described how her PCOS means she struggled to keep her weight down.

Well for polycystic ovarian syndrome what tends to happen is that the… follicles actually do contain eggs. Not all of them… but they aren’t released. I have a hormone imbalance in terms of too little progesterone. So instead of having the normal raise in a menstrual cycle when an egg will be released that hasn’t always happened. And what can happen you can have a period and not actually have an egg release. Or it can go on for months without actually having a bleed at all and that is usually when the doctors have to intervene. 

 

The PCOS itself is one of those distressing conditions for women, because it leads to problems with skin in terms of acne. Fortunately, I haven’t had that. It can lead to hair thinning and male pattern baldness. I haven’t had that fortunately. But I have put on weight and I do suffer slightly from hirsuitism, which is hairiness in places you don’t really want it. But there again, somebody actually told me all women suffer that when they go through the menopause and PCOS women actually learn to deal with it as a much younger age and it doesn’t come as much of a shock to deal with. 

 

In terms of weight gain, that has been very difficult. My weight I have to say, it has been up and down. I have ballooned sometimes and I have tried very hard to lose weight again. But the comforting thing is that doctors have actually said to me, providing that I am not more than 10% overweight, then it shouldn’t impact on the success of fertility treatment. In fact the jury is out on that. I think it is if you have a BMI of more than 28 then there would be a problem there, but I haven’t so I am learning to manage it, albeit I am at a fat phase at the moment. It is just one of those things and the fertility drugs haven’t helped as well. In the last two years I did manage to get down to about BMI of about 23 and I still didn’t conceive. So I am not too worried at this stage. 

 

Carol had not wanted to tell her work about her treatment and so found it very stressful juggling...

Anyway when the time came it was very obvious that I was going to have problems and I asked to be referred and we went down the IUI route and we had two cycle of that, but before that we had had six goes with Clomid and it didn’t seem to be making any difference what so ever. I wasn’t falling pregnant. 

 

I did the IUI and I found that be very, very stressful, because at the time I was trying to fit in the fertility treatment around work and trying not to say anything to anyone because I didn’t want to be seen as somebody who would potentially get pregnant very quickly and then couldn’t deliver the goods in terms of performance. So all the way along I have kept very quiet and not said a thing to any colleagues. Which has been very difficult, because I am naturally a very open and honest person and sometimes I just want to literally say, look I am having a bad day because I am having this treatment, and I have not been able to do that and that has been very difficult.

 

Carol found the uncertainty of her IUI cycle very difficult to cope with.

Probably because when I had the Clomid it was just a question of taking tablets and then going at the time for a scan, which they don’t do any more and if it didn’t work that is when you had a period. In terms of the IUI, the thing that I found most stressful, was that depending which nurse I saw, everyone seemed to have a different opinion as to what was going to happen. So what was happening, I had two or three follicles developing nicely and I was expected to go for treatment two days later to actually have the eggs released and my husband’s sperm to be processed and put into the uterus and at the time I expected that all to happen. I went in the next day and another nurse, nothing had changed, and the nurse said, “Oh no, there is more than two follicles we can’t let this proceed. You would be an ideal candidate for IVF, but we are not going to take that risk.” And at the time I had to cancel business plans, tickets to a meeting in Switzerland and it was just so very devastating. Nobody pre-warned me that that could potentially happen. And I found that very, very difficult to deal with. 

Carol described how each IVF felt slightly different. Sometimes she had lots of side-effects and...

An IVF cycle when you first do it, isn’t so bad, because you expect it to be the answer to all your dreams. It doesn’t quite work like that. I have now had five cycles of IVF and three frozen embryo cycles, one up to blastocyst. Each time I have actually had it, either the drug regime we have to tweak slightly because I have developed cysts from using Synarel and now I have had to go on to down regulate with injections to bypass having the cysts. But each cycle is very different and sometimes I might have headaches and feeling sick and nauseous and other… and very irritable. Other times it is almost like nothing is happening so therefore I have not really had any symptoms what so ever in the down regulation phase. Then it’s a question of having the blood test to see if I down regulated. Sometimes I have. Sometimes I haven’t because of the cysts and then I have had to go and have a minor operation to drain the cysts in order to be able to down regulate and from there it is a question of stimulating the ovaries. That is the exciting time because you feel that you are actually doing something positive, you are actually growing eggs inside you, and it is the first time that you feel actually normal. Albeit you kind of very bloated and very uncomfortable. I have had mild ovarian hyperstimulation syndrome each time, because having polycystic ovaries does actually make you more susceptible to that. I have felt very bloated and almost like what I feel to be like an egg bound chicken round about that time, and it is quite worrying some of the twinges that I felt and I thought oh is something going wrong or is that normal. But each time it has been like that. And I have never felt that worried, even though I was at high risk. The trick is to drink copious amounts of water. If you drink three litres a day then that minimises the chances of getting OHSS. 

Carol described the awful waiting to find out if the eggs have fertilised, and then the two weeks...

Well I ought to talk about the egg collection really. Everybody asks how is it, does it hurt? Actually you are out for the count, you don’t know any different, anything about it. Obviously there is a certain amount of apprehension pre starved from midnight. So you go in and everybody asks the same thing, “How many eggs, how many eggs did I get?” And I have every time. Then the most nerve wracking time starts to happen, it is go home and wait to hear whether they have fertilised or if they are fertilised properly. The second time it didn’t work for me. The eggs were too mature and they didn’t fertilise and I have to say, that was a real low point. I knew that there was nothing to actually put back. I found that very, very distressing and the rest of the time, it is just trying to not think about the fact that in a lab not too far away are they going to fertilise or are they not. And the next day after that you get a phone call and usually I have been too nervous to take it, and my husband has taken the phone call to say how many are fertilised and then usually go back to have them put back a day later, and that can be uncomfortable. If I am really honest because I have had the OHSS assessed or a mild version of it and when it comes to inserting the speculum and putting the catheters, I have to have two, obviously I have got two separate chambers and one embryo goes in either side. That has been very, very uncomfortable, but it is a nice uncomfortable because something is happening for the positive so it is bearable. And then the worst part is the two weeks of waiting. That is absolutely dreadful. The first week it is fine, because you do actually feel slightly pregnant because of the hormones. The second week I become neurotic and it is a question of being quite base about it. Doing frantic knicker checks to see if there is signs of blood spotting or every time you actually wipe with toilet paper to see whether there is any pinkness and your imagination goes into like overdrive at that point and one minute I convince myself, yes, it has worked I am pregnant and then the next minute I think, no it hasn’t. And so a swing in the pendulum of emotions is the worse part of IVF where you have an emotional roller coaster. And everybody says and myself included, if we could actually have been anaethetised or sedated for two weeks that would really help. I don’t think it is possibly but it would be wonderful if it could just take away that agonising wait.

Carol felt that her life has been on hold for too long, and yet found it very hard to turn off...

I think our lives have been on hold for far too long really. The problem is that there is no turning off, there is no switching off the desire in your head to be a parent. You only have to turn on the television and see pregnant newsreaders and presenters… all the way through to Pampers adverts, to opening your curtains and the first thing is people walking past who are pregnant or with small ones taking them to school. I don’t think, unless you are a hermit on some outer Hebride, Hebridean island I don’t think that ever you will be able to turn off that switch. So there isn’t a break really. And also, PCOS sufferers tend very much to be poor sleepers and usually awaken between three and four in the morning and I have noticed very much so that I am lying awake almost listening for a baby I haven’t got if I am really honest. Thinking I should be getting up now. I should be giving a feed, I should be giving a cuddle and I am not, and it is almost like my brain is playing a horrible trick, trick on me.

 

So you are haunted by it? 

 

Yes, yes, it is like being haunted. The nearest I can liken it to, if I am really honest, is it is like dealing with somebody that has died but I have got no body to bury and I have got no place to go and grieve. I can’t go to a grave and lay flowers. It is just there all the time. There is no sort of respite.

 

Carol had polycystic ovarian syndrome that meant she was prone to gain weight. She struggled to...

In terms of weight gain, that has been very difficult. My weight I have to say, it has been up and down. I have ballooned sometimes and I have tried very hard to lose weight again. But the comforting thing is that doctors have actually said to me, providing that I am not more than 10% overweight, then it shouldn’t impact on the success of fertility treatment. In fact the jury is out on that. I think it is if you have a BMI of more than 28 then there would be a problem there, but I haven’t, so I am learning to manage it, albeit I am at a fat phase at the moment. It is just one of those things and the fertility drugs haven’t helped as well. In the last two years I did manage to get down to about BMI of about 23 and I still didn’t conceive. So I am not too worried at this stage. 

Carol has had osteopathy and used Chinese medicine. It is important to her to feel that she is...

[Laughs] yes. I have seen a Chinese doctor and a Chinese herbalist and I have been dreadfully sick after having the herbs which I don’t think are designed for a western palate. I have also tried acupuncture. It is a well known person who is supposed to be very, very good in terms of getting people pregnant. That hasn’t worked I have also seen an osteopath in terms of getting things in alignment. Experiencing organs and making sure that they are not sticking together and all sorts. Yes reflexology. I have had Indian head massage. You name it. I have tried it. So I think that is one of the problems. Everyone seems to have a tip about a couple that they have read about or their mother knows about, or they swear that this works for them and so I have tried all sorts of different herbal medications and supplements and none of them have worked. I actually think that people are clutching at straws. 

 

Has it been quite important to feel as though you are doing something?

 

Yes. Yes. I would never say sit back and don’t listen. Do something that makes you feel good for the moment, whether that be reflexology, whether it is go for a walk, go for a swim. Go to the top of the hill and scream your head off if it that actually releases tension. It is better then not doing anything. And infertility is the one thing that you can’t control in your life, so any little aspect of something that you can control does empower you a little to feel a bit better. 

 

Carol felt that men were overlooked and often feel like a "spare part", although they expected to...

I feel very strongly that the men are overlooked. If in fact the cause of the fertility problem is male factor. Obviously that is covered and they are treated more as a patient, but the problem that I see is that if it is the female problem or a joint problem as all of the treatment revolves around the woman apart from giving the sperm donation. All the attention of the unit, from the doctors and the nurses revolves particularly around the female patient. And I feel very often the guys must feel like a spare part and they are the ones that are trying to be strong and support their woman through their hormonal ups and down and I just would like them to get a bit more of a look in in terms of support as well. Definitely they must at times, feel that they would love to cry but they are not encouraged to do so. They have got to be the strong one to lean on.

Carol found that it was better to be open. People in her close circle now understand why she...

My friends and family have known. A few close neighbours. Because I think it is important that people realise that we are having problems having a family. If not we are perceived as being abnormal not having children.

 

At first however I was very quiet, and then I have learnt the hard way, and the best thing is just speak, open about the feelings, so that people do understand and if you are invited to christening, then you can actually say, “Well actually I have just had a negative result. I don’t think it is the right time for me to be there, because it will hurt too much.” So that is what has happened. 

 

Carol found that as treatment has gone on it has been easier to tell fewer people, and keep the ...

I have shared it with them. I think, as I said before I am quite an open person. I am quite an honest person and I think that people by now, if I hadn’t have said anything would be fearing for my sanity, and thinking what on earth is happening. So my parents have been absolutely fantastic in terms of support. They are teachers, and obviously have surrounded themselves with children all their lives and it is a natural longing for them to be grandparents. And financially they have even like offered and helped and I can’t say I want for better parents.

 

Friends, I have obviously told them what has happened. At first I kind of sang it from the rooftops, thinking that I was going to get a successful outcome. And that didn’t happen and now I am at the stage of thinking, well the fewer people I tell, then the fewer people I have to ring up again and tell them it hasn’t worked, so I just think well it is actually better to keep it quieter now as time goes on. So, and it is more of a private grief between myself and my husband.

 

Carol found it difficult working for a small company and taking time off for treatments while...

It is very, very difficult. Because naturally you want to share with everybody in your social network that you are having treatment but employers will automatically assume that you are going to get pregnant and then take time off for maternity and if you work for a small company then that would cause great inconvenience to them. So it has very often been a question of juggling and saying, “Well I have got a medical appointment.” And not necessarily lying but not telling the truth either. And fortunately I have had, in some weird way, I have had an ovarian cyst because of the treatment, now ovarian cysts occur naturally so I have been able to say, look I have got to go and treatment because I have got an ovarian cyst, which has not been a lie, I just hasn’t told them what the cause of the ovarian cyst was. And I did tell one employer, about a year ago, and he was very understanding but it didn’t work and the reason I told was that his wife was a midwife and I thought if he can’t understand nobody will and unfortunately it didn’t work, but they were very understanding, but most of the time it is very difficult to go into work if you have had a negative and everybody does know, so sometimes it is better not to be truthful. 

 

Have you worked in different places?

 

Yes.

 

Okay so you have moved and had sort of different environments in which to sort of manage it?

 

Yes, yes. I was a UK sales manager and then I have moved into marketing to try and stop doing all the travel in order to be able to get to the appointments more easily. 

 

Carol used several support groups, and found the one organised through her local hospital really...

Well everybody that is a member of the Friends has gone through treatment and at some stage I know they will have thought exactly what I am thinking and they will have been where I have been. If I am upset, they have been there, they can understand and empathise. Also it is a question of coming out with a black sense of humour and coping methods to deal with it. Sometimes you have to develop a sick sense of humour to get round it. If not I wouldn’t get out of bed. I would sit and cry. Whereas we can all say funny stories that have happened as to the IVF treatment, and what went wrong, and one main comment that everybody comes out with when you have your eggs harvested and we all asked our partners straight away who put our knickers on for us. And it is such a strange question but it is a natural fear, you don’t like to feel vulnerable. The fact that we have actually been naked from the lower half for about 30 minutes and not caring about who is looking at that. Oh no, that is not, it is the dignity, who has put my knickers on for me? Am I okay now to face the public? [Laughs]. So yes. IVF or Friends of IVF or any groups like that it is very important and to look to somebody in the eyes and know that they have been where you are. It is very important.

 

And that has been a real help to you has it?

 

Yes. It has. And also it has meant that I have been, felt less helpless about my own situation in that I can help other people going through it and tell them what to expect, and reassure them, and allay their fears that no, it is not the end of the world. Yes, it does hurt a little bit, but it is worth it in the end if your dreams come true. Obviously if it doesn’t then there is always another go and the doctors learn a lot more from cycle to cycle as to how the body reacts and what happens. So it is well worth trying.

 

Carol felt that the counselor she saw at her local fertility unit asked inconsiderate questions...

I saw one counsellor who was at the unit and she asked me, her first question was, “How would you feel if you and your husband could never have children?” And as I was right in the middle of treatment I felt that question would be totally inappropriate, so I responded very angrily and asked her what her, what she would do if her husband or her was diagnosed with cancer. And she said, “What an awful question.” And I said, “Well it is no different from what you have just asked me. You have more or less taken away all my hope.” So I didn’t find it very rewarding at all. There was the strategically placed box of tissues and flowers, and usually in NHS hospitals, you don’t even get a carpet. And all of that was there. I mean the tiniest room I have ever seen in my life and I asked her whether she had had children and had any problems conceiving, and she said no thankfully I have been very fortunate and had three lovely children. And I wanted to scream at her and say, “How the hell do you know what I am going through then?” I asked her about her training and it was just a basic counselling course. She hadn’t had any specific fertility counselling. And I didn’t appreciate it at all.

Carol assumed that her heavy and painful periods were normal and did not mention them to her...

I have to say, I am quite ashamed to say this, but I assumed that all women have painful periods. I took that as being the norm because from the age of eleven that is what I have suffered. And it is only probably about three years ago that I actually plucked up courage to say, “Well actually it is really painful. Sometimes I faint. And sometimes I can actually vomit. Is that normal?” And the people at the fertility unit were absolutely shocked because I had never said anything and it was at that point that they actually did the tests and had a look and could see that there was widespread endometriosis of a moderate nature. They did laser it, but I was told that about two thirds, in two thirds of cases it will re-occur. The endometriosis is actually very, very painful. It can be such… fortunately it only happens around a period, but sometimes the periods are excruciating. I have seen a pain management doctor and she actually told me that I should keep on top of it.

 

With fertility I have been loathe to take any extra drugs because I thought that had a negative impact on potentially become parents, but they actually said, “Well no, that is not the case. If you are going to have a period anyway, any analgesics only stay in the system for 24 hours anyway, and it is much better and it is less stressful to your body to actually be on top of the pain control rather than suffering this huge high, high spikes of pain. And then not dealing with it properly.

 

Also I think it is fair to say to any people, any women suffering from endometriosis that you do pass huge clots which are extremely painful. You do think the first time it happens, and you see these big hand sized clots, that you think my womb is falling out or something is dreadfully wrong and at times I have panicked. I have called my husband. And sort of said, “What is this.” And grossed him out as well. But that is normal for endometriosis sufferers and it is just something that you have to live with really. You can take all sorts of different drugs to help in terms of thinning the actual blood and things like that but I tend now just to deal with the pain with using Nurofen and Codeine when it is really bad and I also use a TENS machine which I found to be very helpful, so… and hot water bottles. I wouldn’t be without a hot water bottles front and back.

 

Carol suggested that Christmas and Mother's Day are particularly hard for women who can't have...

They are incredibly… incredibly difficult to deal with. It seems to be more and more our consumer societies. It is geared up towards these special event days. And whether it be at church when it is Easter and they do talk still about getting the daffodils for the Mums and also Easter egg hunts. Whether it be Christmas and the joy of new birth coming into the world. It is extremely difficult, I can’t turn on the television without seeing kids surrounded round the Christmas tree, opening presents and being really excited and the number of times, that I have heard, “Oh Christmas is a time for children.” I could scream when that happens. I must be honest that Christmas I paint a smile on my face and go through the motions but I wish that I didn’t have to go through it and I put on a brave face for the sake of people around me. But inside I just think that I just really find this difficult to celebrate. Mother’s Day is incredibly difficult. There’s cards everywhere. The length of time that these things seem to be heralded in the shops seems to get longer and longer. So not only do you think oh well I have got two weeks and then it is Mother’s Day. It seems to be going on for six weeks before Mother’s Day. I am not denying mothers their moment of triumph in the fact that they have got a family, but spare a thought for those who haven’t. It is very, very difficult. Women who don’t have children, who can’t have children or are struggling to have children, feel like failures anyway. Whether it be at work when everyone is talking about the children going to school or where to get the uniform or the sub contractor that we have in at the moment who is complaining that he has got little sleep because he has got an eight week old baby. It is so difficult, but then having the events on top of it, it is just a double stab in the guts, just to say well look, you know, you are not a parent, you are a failure. 

Carol's husband was a "rock". They tried to keep strong for each other and live a normal life.

Well he has been my rock. So he is there for me through thick and thin and regardless of the outcome and everything else. We have never laid blame at each other’s door. I mean we still don’t now. It could be a combination of our genetics that aren’t working. We will just try and be there for one another and I must admit, I very often try and hide a lot of the tears because I want to spare him the pain as well. And yes, I have had a few nights crying when he is asleep, but I am sure with him, he has been trying to be the strong silent type, and I am sure he would like to punch the wall and let out his grief and emotions, but he keeps strong for me. So that is how we deal with it. And the rest of the time, we just try and have as normal a life as possible, as you can, when we are in a sort of permanent state of grieving.