ENDOMETRIOSIS CAN BE associated with difficulties becoming pregnant, but even women with severe endometriosis can still have a baby naturally. Indeed, it is estimated that 60–70 per cent of women with endometriosis are fertile and can get pregnant spontaneously and have children. Of the women with fertility problems, a proportion will get pregnant after medical assistance – either surgery with removal of the endometriosis lesions or assisted reproduction technologies (e.g., IVF). It is important to remember that having endometriosis does not automatically mean that you will never have children – rather, it means that you may have more problems in getting pregnant. And, if you’re planning on having a family, it’s a good idea to try ‘sooner rather than later’ (now considered to be before or around the age of 30) but this always depends on life circumstances.
Women with endometriosis can take longer to become pregnant and can be less likely to conceive than women without endometriosis. It also appears that the more ‘severe’ the woman’s endometriosis, the more likely it is that she will have difficulty becoming pregnant. Thus, women with deep endometriosis tend to have more difficulty conceiving than women with superficial endometriosis. We don’t really understand why this happens. It may be because disease has distorted a woman’s anatomy, meaning that endometriosis has directly affected her reproductive organs. Endometriosis can develop both on and within the ovaries, which could impact the way eggs are released from the ovaries, or it could affect their implantation in the uterus because the uterine lining is different in women with endometriosis. In addition, because we don’t yet fully understand why women have endometriosis, it could be that the inflammatory nature of the disease directly impacts fertilisation or implantation of the embryo. Scarring, or adhesions, can also affect a woman’s fertility.
Many women will be concerned about their fertility when they first hear that they have endometriosis, but not all women’s fertility will be seriously affected by it. Some women find that they can become pregnant easily and maintain a pregnancy to full term, whereas for others, it is much more of a problem. Why is this? Well, although we don’t know for certain, we know that there are some risk factors with endometriosis that may mean a woman’s fertility is more likely to be affected. Let’s take a look at some of these:
It can be reassuring to know that the majority of women with endometriosis have superficial disease and although this can be associated with infertility, many women with superficial disease will be able to get pregnant naturally. Excision or ablation of superficial endometriosis (not involving the bowel, bladder or ureter) can improve the chances of a woman becoming pregnant naturally if they are having difficulty trying to conceive. But, there is still not enough understood about the relationship of endometriosis with infertility, and why surgery can be helpful.
Surgery for endometriosis-related infertility aims to remove any endometriosis and adhesions present. In women with superficial endometriosis, laparoscopic surgery leads to better pregnancy rates, but in women with deep endometriosis, no well-designed studies have, as yet, looked at the effect of surgery on pregnancy rates. There is also considerable debate about how large ovarian endometriomas in women with endometriosis-related infertility should be treated. Removing an endometrioma may make it easier for the gynaecologist to collect potential eggs for IVF, but removing an endometrioma may also result in the removal of some of the adjacent ovarian tissue, including some eggs. So, the decision to remove or not remove an endometrioma must be carefully considered.
Medications for endometriosis (e.g., combined pill and GnRH agonists) do not improve fertility. They also take up valuable time because you can’t get pregnant while you are taking them.
So, we’ve established that, overall, women with endometriosis may be more likely to have fertility issues than other women, with certain risk factors potentially increasing that risk, but we also need to note that endometriosis also increases the risks of complications, such as miscarriage and ectopic pregnancy.
Unfortunately, miscarriage is a common outcome in all pregnancies, whether the woman has endometriosis or not; in the general population, one in five pregnant women is likely to miscarry.
Research has shown that in women with endometriosis this risk is increased to about one in four. This is, again, a complex area that is not fully understood, but it’s thought that the conditions within a woman’s pelvis, and specifically within her uterus, may affect how the uterus actually works during pregnancy.
What can you do if this is you? Well, a single miscarriage may not be considered that unusual, but multiple miscarriages would normally be investigated by gynaecology, where they may perform blood tests and scans to look for possible causes. This is sometimes when a woman is first diagnosed with endometriosis. Chloe had repeated miscarriages before she was diagnosed with endometriosis. ‘Throughout our infertility journey, there were a number of times when I saw gynaecologists and asked what it could be, there was a reference to “oh, it could be endometriosis”, but I was never diagnosed, it needed to be by laparoscopy. I pleaded for a laparoscopy on numerous occasions through my local hospital and I did have one booked in, but amazingly I was pregnant at that time and I had a miscarriage only a few weeks before my laparoscopy, so the consultant said, “Well, you got pregnant, so therefore we don’t need to do a laparoscopy and we don’t need to look at what’s happening.”’
If you already know or suspect that you have endometriosis, what can you do if you are pregnant or are trying to conceive? It’s important to know that research suggests that women diagnosed with endometriosis who are pregnant should be monitored more closely throughout their pregnancy. This may mean, for example, more antenatal scans are performed, although there is no clear consensus as to what ‘more closely monitored’ means and how many additional check-ups you should expect. You should discuss this with your GP, midwife or consultant.
Unfortunately, miscarriage is not something that can be prevented or avoided. However, if you’re planning on conceiving, it’s important to ensure that you are in the best health possible. We know that giving up smoking, not drinking alcohol and keeping to a healthy weight can ensure that you are in the best position possible to support a healthy pregnancy.
Miscarriage is often not talked about, and the experience can be very isolating for a woman and her partner. Repeated miscarriages can be utterly devastating. It’s important to seek support and advice from your partner, family and friends, or seek professional help from your GP and from other services detailed in our Resources section (here).
I went to work, did my pregnancy test and it came out positive and one of my bosses was near the toilets and she heard me scream. I am quite an emotional person, but not overly like that. I just couldn’t even string a sentence together and when I was able to, I told her I was pregnant and she went, “Oh that’s brilliant news” and I was saying, “No it’s not, I can’t do this again, I just can’t lose another baby, it’s just not something I can do.’ And I didn’t realise I felt like that, I wanted a baby, but I didn’t realise how it was affecting me. – Chloe, talking about the emotional impact of recurrent miscarriages caused by severe endometriosis
Ectopic pregnancies are less common than miscarriages, with around 1 in 80 to 100 pregnancies ending up as ectopic. But, research has shown that in women with endometriosis, this risk is more than doubled.
Most ectopic pregnancies occur in the Fallopian tube. They can cause internal bleeding and severe pain in the early stages of pregnancy. However, they can also cause minimal or vague symptoms. Ectopic pregnancies cannot be avoided and once a pregnancy is ectopic, unfortunately it cannot be maintained. Treatment is often with surgery, although sometimes medication is used to avoid additional trauma or damage to the reproductive organs.
If you think you are experiencing an ectopic pregnancy, it’s important to seek urgent advice and support from healthcare professionals. Organisations such as those detailed in our Resources section can give you advice too.
What is available to those women who, for one reason or another, cannot get pregnant naturally? One way is with assisted reproductive technologies or ART.
ART are actually a group of techniques that may be used to help a woman get pregnant. These include techniques such as IUI (intra-uterine insemination), which involves inserting sperm directly into the uterus to aid conception. IUI may also involve the use of hormonal medication to assist the process by regulating ovulation. IVF (in vitro fertilisation) is a more invasive and involved process whereby ‘heavy-duty’ hormonal medication is used to stimulate the ovaries to produce lots of eggs. The drug regime is personalised and tailored towards your reproductive health. Some of these drugs have to be taken by injection, which women or their partners can be taught to do. Many people find the technique more straightforward than they expected. Taking strong hormonal medication and the whole IVF process can be physically and emotionally demanding, so it’s worth planning how that fits into your life beforehand.
Regular scans show when the eggs are ready to be collected. The eggs are then collected from a woman’s ovary, normally under sedation, and fertilisation takes place in a laboratory. Sometimes the process of fertilisation takes place using ICSI (intracytoplasmic sperm injection), which is where a sperm is injected directly into the egg. This may be done if there are issues with sperm quality.
After fertilisation has taken place, there is a short time to wait to see how many eggs will fertilise. After this, the embryos are graded for quality. Sometimes the length of time that the fertilised eggs remain in the laboratory will be extended to allow the embryos to develop to day 5, ‘blastocyst’ stage. The decision on when to transfer is very individual. Usually, one or two embryos, depending on a woman’s age and the quality of the embryos, are then inserted into the woman’s uterus.
ART improves pregnancy rates in women with endometriosis when compared with no treatment, but the pregnancy rates remain lower than that of endometriosis-free women. The success of the treatment will depend on many factors, including your age, the quality of your partner’s sperm, how long you and your partner have had fertility problems and whether you have had a previous pregnancy. Many women may benefit from a combination of ART and endometriosis surgery. Some women worry that IVF may make their endometriosis worse but there is no evidence to suggest that this happens. Sometimes women are in the position of either having to choose to undergo fertility treatment, or pursue treatment for their endometriosis. This can be emotionally very difficult and it is important to seek support from both health professionals and your own support network.
Amanda became pregnant on her third round of IVF. She sought advice and was diagnosed with endometriosis by laparoscopy. She explains what happened after that: ‘We went down the IVF route but I still had endometriosis – and lots of it – but I decided to put (treatment for) that on hold and try IVF. We managed to get through a cycle of producing eggs and we did three cycles to get my first daughter.’
How did Amanda find going through IVF? ‘It’s involved, you’re injecting yourself with hormones and then constantly having to have scans and blood tests, hoping that you produce enough eggs, and then you don’t, and they’re not good quality. It’s an emotional rollercoaster. My life revolved around being at the hospital, having the vaginal ultrasounds, having injections, having blood tests … I was just in a whirlwind of wanting to be pregnant so much that my life was consumed by wanting to be pregnant, especially when all my friends were pregnant.’
Undergoing IVF is a huge undertaking, so it’s important to be prepared and have lots of support in place. It is important to make sure that you discuss pain relief with your gynaecologist in advance of the treatment. Amanda also wished she had been able to access counselling after her first IVF ended in miscarriage. ‘I think they have that in place now in the hospitals,’ she says. There is also the financial aspect to consider. ‘It’s just very expensive, but the emotional side of it, I don’t think until you’ve actually been there, it’s really hard to kind of see how emotionally involved it really is.’
The funding of ART by the NHS is a widely debated and controversial area. In reality, access to funding varies considerably across the UK and there may be specific restrictions, in terms of age, previous children (including those of partners), weight, smoking status and reproductive health. Younger women with a normal BMI (body mass index) and normal hormone levels (including egg reserve, measured by AMH (Anti-Müllerian hormone)) who don’t smoke, are in a relationship where neither partner has children already and do not require donor materials (see below) are more likely to receive funding. In practice, many people self-fund for assisted reproductive techniques.
Sometimes donor eggs or sperm may be needed as part of the assisted reproduction process. This can be for a variety of reasons. It may be that a woman has insufficient eggs, or poor egg quality, to be able to undergo IVF treatment without donor eggs, or the quality of the man’s sperm may be insufficient, requiring the use of donor sperm. Donor sperm may also be used by single-sex female couples, or by single women, to achieve conception.
When donor materials are used, there are complex legal requirements and couples or single women would be required to undergo pre-IVF counselling to be approved for the process. This specifically looks at the rights of any children conceived as a result of using donor materials, and also offers advice and support in what to tell children about where they have come from.
When women with endometriosis require donor materials to conceive, this requires extremely careful communication.
The use of donor materials for ART is very rarely funded by the NHS and can be expensive. Details of organisations who can offer advice and support on this complex area are shown in our Resources section.
People don’t understand why I’m scared to get pregnant … I’m scared because of the pain. Not being able to take medication. I’m scared as I’m at higher risk of ectopic pregnancy. I’m scared because of potentially having adenomyosis, whether or not implantation will happen. I’m scared that if I’m lucky enough to have a baby, I’ll be in too much pain or have too much fatigue to be able to look after it. – Sophie
Women expressed a range of anxieties about their fertility – from the ability to get pregnant, through the stress of potential complications and their endometriosis symptoms both within and beyond pregnancy. Preena is one of these women: ‘I mean, I’m not getting any younger, every year that goes on is limiting my chances, so that’s my main worry. Having a family, whether my daughter will have it, whatever may happen next … it’s kind of a general everyday worry, but then there’s no answer.’
We talked a bit about ethnicity and endometriosis in Chapter 1, and when it comes to pregnancy, this can be where cultural pressures may come into play. There can be huge family pressures for some women, and families may not necessarily know that the woman has endometriosis if periods and gynaecological diseases are not widely discussed. Nicole felt this pressure ‘because my husband comes from a Jamaican background, he’s got masses of aunts and uncles on his side who were always questioning when are you having a child? So there is a persistent pressure to do that and in the end I remember I snapped at a family party. I just turned around and said, “Actually, I don’t know if I can have children, please leave me alone.”’
It not only places pressure on the woman, but anxieties about fertility can also put a strain on relationships with partners. ‘But I think if you’re with the right person,’ explains Amy, ‘and the timing is right, it’s something you can work through … I don’t doubt that he will be as supportive as he always has been …’ Amy’s husband has been reassuring and supportive towards her. ‘He said, “If we can’t, it’ll be sad but we have great lives and we are teammates. It’ll be okay.”’
Some women found they changed their priorities as a result of endometriosis, so that they now focus more on their fertility than in their previous plans, as Beth explains: ‘I always thought that I would be a career woman and family would be later for me. If I had finished my PhD now, I would be trying for a baby.’
You may also wish to consider adoption, providing a child with a loving home and family and helping them move on in life. For some, adoption is their first choice for starting or extending a family, whilst some arrive at adoption following experiences of infertility. If you’re thinking of adopting it can be quite daunting to know where to begin, however there is plenty of advice from the government, councils and charities to help you find out more.
I think perspective helps because, much as I would have loved it, I try to tell myself now that I’m very lucky to have the lifestyle that I have, and I make my own choices. That doesn’t mean it will ever take away the gap that is there from not having a child to love and to care for. – Zoe
Some of the hardest stories come from the women who had had to change their hopes because of endometriosis. So whilst many women with endometriosis will be able to have children, we must pay a special tribute to those women who talked to us about what it was like to move onwards from childlessness. These women courageously shared their thoughts and feelings about infertility. We leave the final words of this section to them, with the hope that at a future date, research will yield answers and solutions that mean endometriosis no longer takes away some women’s ability to have children.
Chloe hopes that women and partners will be afforded a better experience of being told about their infertility: ‘I had to tell my husband on my own. He came and got me and took me to the car in a wheelchair and I got in the car and I couldn’t talk to him for ten minutes because all I did was cry. And then I had to tell him what had happened. I think that’s devastating for anyone, I wouldn’t want anyone to be in that situation. So it would be great if people can change how they tell people that they can’t have children. To me that would be a really big thing to change.’
Olivia focuses on being a brilliant aunt to her nieces and nephew, as well as putting her time and energies into her work and her animals. ‘Some women, they get to the point where it’s the only thing that they want and it’s the end of the world for them if they can’t conceive, whereas for me, I kind of accepted that and thought, right, well, what can you do instead of being a mum? And that is making sure my sister’s children come first for me, so my nieces and nephew, my animals, and also working.’
Saskia is grateful that her partner may be able to carry a child. ‘The thing is me and my partner are in a really fortunate position in that that she could, as far as we know. I mean, she’s amazingly healthy and strong and she could have children and that’s something that we will definitely look into and we just have to focus on the fact that we do have that option. We are really lucky in that respect, whereas lots and lots, thousands of other women aren’t at all.’
Zoe loves time with her godchildren and friends’ children, but the loss cannot be forgotten. ‘I’m 43 and I think I’m starting to go through the menopause. I feel as reconciled as I’ll ever be to that, and I think possibly because I’ve been telling myself since that early age of diagnosis that it probably wouldn’t happen, the driver for me has always been meeting someone and having a committed relationship for life. I’ve had to accept that children may not be part of that and embrace the fact that I’ve been lucky enough to have three godchildren and I have friends with children and relatives with children, so that I do have children in my life. In accepting that, it does come back to that loss … loss of that opportunity to be a mother, that intrinsically feminine creativity women are meant to have within us.’
Chloe reminds us that infertility is a very hidden loss, one that for many women is difficult and pervasive, but she tries to make sure she spends as much time as possible being there for her nephews, nieces and godchildren. ‘All the miscarriages, all the fertility appointments, gynaecologists … my husband and I nearly split up twice, we got closer than I would ever care to be again to losing “us”. I think infertility is the single hardest bereavement you can go through because it is so silent. And people are less accepting of a pain that they can’t see, but if your rite of passage has always been to be a mum or to be a parent then you know when it’s gone, it’s – I can’t just keep saying painful, I paid a lot of money for therapy and my counsellor said to me one day, that for me being a mum was as intrinsic as breathing. And that was a really powerful statement that she made because I think she was right. And it has taken me maybe the last year to 18 months to get a level of peace and acceptance that I am comfortable with.’
We’ve heard about the difficulties women with endometriosis might face in getting pregnant, as well as potential complications during early pregnancy, but what happens to them when they are pregnant? Is pregnancy different for women with endometriosis and can it affect the actual delivery? Well this, again, like all aspects of endometriosis, is very individual, but we should note that the pregnancy and birth experiences of women without endometriosis are also extremely varied.
I was amazing in my pregnancy, I had no pain for the first time ever in years. The pregnancy itself, I carried really well with my first daughter, there was no pain, I didn’t feel how I felt with the endo, all drained and tired, an emotional wreck, I just felt pregnant. Yes, it was lovely that nine months. I felt good, it was a good time of my life to be honest. – Amanda
So what can we say specifically about women with endometriosis? One aspect of this is that the method of delivery may be affected by complex surgery. Amanda became pregnant naturally with her second child within months of having a bowel resection for deep endometriosis. This pregnancy sadly ended in miscarriage, but then she quickly became pregnant again. Her second daughter was delivered by caesarean section. She tells us: ‘I thought I was never going to get pregnant and I fell pregnant again and then our second daughter was born by C-section. Miraculous! I don’t know how she arrived but the symptoms subsided completely during pregnancy, I felt really good, really great. When I had my C-section done my gynaecologist said my ovary was clear, there was no endometriosis, it was lovely, it was all nice inside.’
Daisy was diagnosed with endometriosis during her first pregnancy, when an endometrioma was found on her ovary. This made her first pregnancy extremely stressful and difficult because she had to have surgery on her ovary whilst pregnant, which is rare. She found giving birth, in comparison to her actual pregnancy, more straightforward: ‘Actually when she was born, I was really quite relaxed, or I thought I was – because I felt like it was not nearly as bad as what I had gone through, like giving birth to her was not as bad as the rest of it.’
She wasn’t expecting to get pregnant again, but she did: ‘I was told I probably wouldn’t have any more children, which was not a surprise, except that I think possibly because of having had the cyst removed and then breastfeeding for a while, I actually got pregnant a second time after my daughter, so I had them fairly close together. A definite miracle baby!’
Her second pregnancy was much more straightforward: ‘I just felt it’s amazing being pregnant in a normal way. I don’t think I really worried about endometriosis because I was just, “Oh great! I’m pregnant, I’m not having periods, I’ll just deal with it all afterwards.”’
If you’re a woman with endometriosis who has concerns about what pregnancy or labour might mean for you, you should arrange to speak to a healthcare professional, whether that is your consultant, specialist nurse or midwife.
We’ve looked at the potential challenges of getting pregnant, pregnancy and birth for women with endometriosis, but what are the issues that mums with endometriosis might face once a baby arrives? Many women are anxious about how their symptoms might be after pregnancy, or how it might affect their ability to look after a child. Let’s first hear from women about what happened to their endometriosis after pregnancy.
The endometriosis during my pregnancy was fine, I had a straightforward pregnancy really … The endometriosis sort of went away for nine months but then came back with a vengeance when she was born, so it was held off for all that time and then it came back really badly after she was born. – Amanda
During pregnancy, whilst a woman is not having periods, the endometriosis lesions that were there before pregnancy will still be there, but they often don’t cause symptoms. However, once periods start again, the symptoms of endometriosis are likely to return.
Nicole’s symptoms stayed away whilst she breastfed: ‘I breastfed my daughter and my symptoms were okay, they were really manageable and yes, I suppose you do get relief from it, and it was only when I stopped breastfeeding that it started returning. They can’t really say to women “now get pregnant” because I don’t think it solves the issue. I mean, you do get a bit of relief if you breastfeed – if you don’t breastfeed I think it comes back quicker.’
Ava found that her symptoms did improve after childbirth. ‘Having been through childbirth, the endometriosis pain has certainly reduced, but it hasn’t gone away entirely. It doesn’t disappear; instead it keeps coming back. What is different is that I no longer writhe around in agony. I am much more able to deal with my pain myself than I ever used to be.’
How did mums with endometriosis cope with their symptoms returning? Nicole tells us, ‘I’ve really enjoyed having my daughter. It can be hard work in the days when I’m poorly, there’s a lot of guilt. All she wants to do is play but I’m going “No, Mummy can’t move, can I just give you a cuddle?” “I don’t want cuddles, I want to go and paint, go outside and go to the park…” That’s quite hard at times because all I want to do is sit down and you can’t, so it’s been hard.’
Daisy had a difficult pregnancy due to a large endometrioma on her ovary, so she feels she has been ‘maybe more relaxed as a mum because of it, because I just had so much trauma’. Daisy is now able to spend more time focusing on her own health and managing her diet, but she wasn’t able to do this immediately. ‘There have been times I’ve felt really ill and I’ve just had to carry on, but mostly the children have been a big distraction. It wasn’t really till my son was nearly one that I found the energy to go and look after myself a bit more.’
Taking time to look after yourself, seeking support from your family and friends, and doing whatever you need to do to help you cope with your symptoms are important for mums with endometriosis. We’ll look further at things that women have found help them cope with their symptoms in Chapter 7, Adjusting life. Nicole copes through: ‘A lot of stubbornness and determination … I’m always doing stuff, because if I’m doing things, I’m not thinking – but it has caught me out. I’ve had to stop in the middle of Tesco’s because it really hurts. I’ve had to catch my breath and go, “Oh that was not nice” and obviously if I’m with my daughter, there’s a bit of a look as well because Mummy’s screwed her face up and she doesn’t look very nice.’
Nicole finds she has to weigh up taking painkillers to manage pain, versus being able to be there as a parent. ‘They say they can give me stronger painkillers but how can I function as a mum, as a parent and a wife if I’m all zonked out?’ This can be very challenging and emphasises not only how important a woman’s support network is, but also how tough it can be to manage symptoms when you’re a parent. ‘The hardest part of having this disease is when my endo is bad and my son is also not well. Obviously, I must still nurse him. I must ignore the fact that I am hurting or feeling sick because he needs me,’ says Ava.
And although it is challenging, women with endometriosis who have children are always reminded just how precious and special their children are:
My daughter is my positive out of endometriosis. I’ve got her, you know. I will take my daughter, if I’ve got endometriosis for the rest of my life I don’t care, but equally I need to do something to spread knowledge. I can’t just sit there and do nothing. – Nicole
Now I have a daughter, what are the implications? … Have I given her that awful disease that I have, is that my fault or is that just the way it is? – Nicole
We know that, although you are more likely to have endometriosis if you have a relative with it, the genetics of endometriosis are complex and it is unlikely that a woman will pass the disease on to her daughter. But all of the women we talked to that had children spoke, not only of their deep worry of passing the genetic makeup that may cause endometriosis on to their daughters, but also of their desire to ensure their children were better equipped to understand periods and be aware of what is normal, and that applied to both sons and daughters.
Ava talks about endometriosis to her son: ‘My son and I are close and we do have topical conversations and I will discuss endometriosis with him in depth so that he has a clear understanding and appreciation of a woman’s struggles with this disease. I think it is important because there is always the possibility that he could befriend, date or even marry someone who has it, and I would like him to know what we go through and be that support; be that rock for someone else.’
Women with daughters are particularly anxious for them, but are conscious about not projecting this worry on to them, as Daisy explains. ‘I feel quite aware that I have a daughter and that one day perhaps endo will be her inheritance. I feel I will probably – the first period she has – be watching her every move and questioning her. I mean, partly in a good way, because I will know. She already knows that women have periods and it happens every month. I obviously didn’t tell her that it was painful, there’s obviously no point at the moment.’
With their own knowledge and experiences, however, women with endometriosis ultimately know that both their daughters and sons will have the one thing that perhaps they did not have themselves: awareness. ‘That’s one generation that has been educated,’ says Nicole. And with that knowledge comes the clear opportunity for earlier diagnosis.