Analysis of data from both women with pelvic pain disorder and endometriosis revealed complementary themes. The results from both participant groups are presented together to compare women’s perspectives across each of the themes below. These include; The Struggling Woman, The Unheard Woman and The Self-Silenced Women.
The ‘Struggling’ Woman
Across accounts from women with both pelvic pain and endometriosis, pain was described as “absolutely horrendous”, “agonising”, “excruciating” and “so intense”. For many women, “the pain impacts everything you do” (Tara, EP) and “really invades a vast majority of my life” (Elise, PP). However, the areas that women most commonly found “hard”, “tough” and “struggled” with were sexual intimacy, fertility, parenting, and work.
Kate (PP), described her sex life with her husband as a “day-to-day struggle” and that for her, sex “hurts every time. It’s never been really a super positive experience but I just have to get through it.” Similar sentiments were reflected in Elise’s (PP) account, for her negotiating painful sex as a newlywed was, “one of our biggest struggle[s] just because you go into marriage with these expectations”. Women with endometriosis similarly described sex as “not enticing” due to pain. Amy (EP) told us, “all those years of it hurting, in your brain, [your] automatic response is, “No, thank you. I don’t really feel like it because it’s going to hurt.” For some women, not being able to have sex impacted on both their current and future relationships. Tara (EP) described that her “relationships suffer” because she tries to “keep everybody away” when she is experiencing pain, and Juliette (PP) said, “like dating relationship[s], that’s a constant, when do I bring this up, how do you mention that sex is off the cards?” A number of women also described the impact that avoiding sex, or not being able to have sex, had on their sense of self and identity as a woman. Participants said, “you feel awkward because everyone is naked and you’ve just proved that you’re not a woman, nothing there is working” (Ella, EP) and that not being able to have sex “impact[s] your self-confidence…[it’s] almost an area to avoid because you don’t want to necessarily have these conversations or face the rejections” (Juliette, PP).
Addressing fertility issues was a struggle that was consistently brought up among women with endometriosis. Participants told us, “infertility is one of the hardest things” (Amy, EP) and that “I was diagnosed when I was 17. It’s affected my life really severely. I’ve had lots of miscarriages. I’ve had a lot of trouble when I was falling or trying to fall pregnant” (Sarah, EP). While infertility was less often brought up amongst women with pelvic pain, Elise (PP) reflected how the “flow on effect” from her vulvodynia pain has impacted on her capacity to become a mother. She said,
The flow on effect from that lack of sex life which is my husband and I would really love to start a family but, you know, we can’t, and I’ve got friends all around me having babies and that side of it is really very tough to deal with. The pelvic pain as a whole really invades a vast majority of my life.
While some participants successfully conceived through IVF, their struggles with infertility contributed to women feeling “defeated”, with some describing its negative impact on their mental health. As Sarah (EP) said, “the mental health…having so many miscarriages, I think that really messed with my head”.
Where women did have children, the impact of pain on women’s capacity to parent was discussed across both groups. Alison (PP) told us, “my two boys…when they were young…I couldn’t even pick them up, and they would see their mother lying on the couch in pain…every single day for six years”. Similarly, Tara (EP) described,
I have three boys and we’d wrestle, but I always have a sore tummy and I feel like such a horrible mum because I’ll suddenly go, “No, you don’t. You can’t touch my tummy.” We’ve just been having the best time I’m suddenly in all of this agony, and it ruins the moment…it stops all of that connection.
The ability to parent was particularly compromised when women who had endometriosis needed to take strong pain medication. Nicole (EP) adopted the position of a “terrible” and “disgraceful” mother after forgetting to put the rail up on her child’s cot because she was in so much pain and taking strong pain medication. She said;
I know that makes me sound like a really terrible mother that I did that…I just think you're a disgrace as a mother that you did that, and all because of pain that I don’t know how to manage it any other way, I don’t know what to do. So that’s my biggest thing that I can’t be the mother that I thought I would be and that I wanted to be.
In a similar account Natasha (EP) described sacrificing taking pain medication so that she could drive to pick her daughter up from school, saying, “When I’ve had an attack at work and she [co-worker] was like, “Oh, have you got pain?” I’m like, “Yeah, I do but I can’t drive home if I take that”, and I’ve got a two-year old daughter so I have to pick her up and then I have to function with her.” The inability to be the mother that women wanted to be resulted in distress, with women feeling “sad”, “horrible”, “disappointed” and as though “they were letting their children down” (Tara, EP).
Across both groups of women, participants frequently described that pain significantly impacted on their ability to work, resulting in lost opportunity. Lucy (EP) said, “I get five minutes an hour to get up and go for a walk, so it’s really difficult. I’m in a lot of pain, I’m so uncomfortable, even when I do my heat pack” and Elise (PP) told us, “if I’m having a really bad flare up day, my vulval pain, it just distracts me, it’s horrible constantly sitting there at the back of your head, like you’ve got this burning.” For some participants, the chronic pain they endured meant they could not go for a promotion or had to leave their chosen career pathway. For instance, Holly (EP) said, “One of the things that upset me the most was I actually had to quit my job as a police officer in [city name] because my endo was so bad” and Alison (PP) described,
I have not been able to work full-time, I have not been able to pursue my career…I had often been asked to take on the role of becoming an assistant principal. I have not been able to and I have not been able to tell anybody why either.
As eluded to in Alison’s comment, what made matters worse for both groups of women, but particularly women with pelvic pain, was their inability to communicate to their colleagues why they could not work. Emma (PP) for example, said she struggled to tell colleagues why she needed to miss a meeting, telling us, “I’m not going to sit here and go, “actually, guys, I can’t come into this meeting because I’ve got chronic urethral pain…I feel like I’m weeing razor blades” and Juliette (PP) said, “you can’t just say to your boss “Hey, look, I need to go home because my vagina is burning,” I can’t say that.” In many instances, this led to women silencing their pain in the workplace.
The Unheard Woman
Women with both pelvic pain and endometriosis described a long journey to diagnosis, with some women still experiencing undiagnosed pelvic pain. For instance, women said, “it was a long story to being diagnosed” (Alison, PP), “eight years later is when I found out it was all from endo” (Amy, EP) and “I don’t really have a diagnosis…It’s been a long road” (Kate, PP). For many women, not being listened to and having their pain being dismissed resulted in a delayed diagnosis. Despite women across groups describing knowing that “something is not right” (Elise, EP) women were told by family or healthcare professionals that, “I was hypochondriac” (Tara, EP), that it “it wasn’t that bad” (Sarah, EP), and that “people assume that women or females exaggerate the pain” (Elise, PP). Where no explanation for women’s pain was seemingly apparent by healthcare professionals, their pain was often completely dismissed, as Kate (PP) said, “my local gynaecologist just thought it was all in my head I think, which is really painful”. Internalising this diagnosis left women feeling as though they were “absolutely crazy because no one believes that you’re in pain” (Tara, EP) and that “you’d start to believing that you were crazy and it was all made up” (Susan, EP). Even when women did receive a diagnosis, for some women across groups, it “took ages to come to terms” with the diagnosis (Elise, PP), positioning it as “really confronting” (Emma, PP) and the “most devastating thing” (Susan, EP). For women with endo, it was more likely to be positioned paradoxically, both a “relief” because they now had “permission to feel sick” (Michelle, EP) but also “devastating”, as women realised they had a chronic disease with “no set thing [treatment]” (Susan, EP) for cure.
Across both participant groups, women also described a lack of ‘deep’ listening from healthcare professionals when they were describing their symptoms. For example, Alison (PP) said, “my GP continuously for four or more years kept telling me it’s simply referred back pain… I’m telling them that I have got deep, deep abdominal pain…for them to simply say, “Oh yeah, it’s just referred back pain” and Rosa (EP) telling us, “[the doctor] was like, ‘I think you’ve got malaria’, I worked in Kenya and had malaria…I’m like, ‘I can definitively tell you I know what malaria feels like. This is not malaria.’” Not having symptoms listened to meant that many women experienced multiple incorrect diagnoses, as women told us, “I kept getting told I had UTI” (Anna, EP), “the registrar in the ED department told me I had an infection…probably just ingrown hair” (Natasha, EP), “a doctor tells me I had Chlamydia” (Susan, EP) and “It’s because you are overweight” (Tara, EP).
In many instances, these misdiagnoses led to unnecessary drugs or invasive procedures, and distress. Participants told us, “[the doctor] was saying it [chlamydia] was some special strain and I had to put acid suppositories into my vagina…it was the worst thing I’ve ever seen in my life” (Susan, EP), “I still spent about a year on antibiotics which probably did me a lot of damage” (Anna, EP) and “the amount of different treatments I had…pudendal nerve block, I had Botox, I had some pulsed radiofrequency “(Kate, PP). For some participants, this led to significant mistrust in healthcare professionals, with Tara (EP) telling us, “I just had more surgery that just made things worse. I’ve got adhesions, I’ve pleural endometriosis now which is everywhere, and I don’t trust anyone. I don’t want to go see doctors” and Nicole (EP) saying she tries to “to avoid doctors now. I’m just so sceptical because everything I do it just ends up worse.”
Contrary to women’s experiences above, some participants did describe positive experiences with healthcare professionals. The key commonalties across women’s accounts was the importance of empathetic care, underpinned by being listened to and feeling “heard”. As Elise (PP) told us, “thankfully I found a GP and she’s been really good all along, as in she listens and she’s quite empathetic… they don’t minimise pain and that they really listen” and Kate (PP) described,
My specialist now…they're kind of the opposite…you go there and you feel like you’re being heard…they're trying their best to understand and piece all the pieces of the puzzle together, rather than just clutching at straws.
The Self-Silenced Woman
Across participant’s accounts, women spoke of the normalisation of sexual pain and menstrual pain by doctors and other women in their lives. This meant that when women did experience pain, they silenced their concerns and were less likely to seek help. The normalisation of sexual pain was brought up across both groups of women but was particularly apparent among women with pelvic pain. For instance, Kate (PP) said, “when I started to try to have sex and it was quite painful…I realise[d] that things weren’t quite right…advice from my friends and even mum [was] to maybe just keep trying to make it better.” In a similar account Elise (PP) described trying to have sex on her honeymoon, telling us,
It was very agonising and not pleasant, the worst holiday I’ve ever had in my entire life. But shortly after that, we battled through for a little while, maybe a month or so trying to work out what was going on. Again, I had mum in my life and ladies saying, “Oh, it’s normal to have pain.”
Menstrual pain was similarly normalised, with Amy (EP) saying, “pain for me was normalised, I didn’t really pursue having it looked after or checked” and Susan (EP) telling us, “I thought it was normal up until last year when – last year it got worse and I was taking like two days off each month.” The normalisation of menstrual pain was often reinforced by mothers, when they too had experienced difficult menstrual cycles. As Nicole (EP) described,
My mum started early, had a lot of problems, early menopause, all the rest of the hormonal imbalances, my sisters also both have it. Because my mother experienced a lot of pain, a lot of bleeding, it was normal for her…there was like, “Yeah, stay home,” but there wasn’t like, “Let’s investigate this further,” because in her mind it was normal.
The sociocultural silencing of women’s bodies, particularly with regard to reproductive health also contributed to women having limited health literacy, including not knowing about their anatomy or what was “normal” menstrual pain or bleeding. Elise (PP) described, “I’m ashamed to say it, before I started going down the journey of getting help for this pain, I didn’t know about how my body works and I didn’t know anything”. Women told us that, “no one really talked about it. They said you bleed and that’s it. No one said it was painful, no one said it was heavy” (Tara, EP), and that “it’s always been like, “You're on your period, don’t talk about it, just deal with it,” type of thing and so you never learn about it” (Lucy, EP). For participants who experienced pelvic pain, fear of judgment and embarrassment acted as a further mechanism to silence women’s experiences. This for some women, led to feelings of isolation or not being able to reach out for support. As Alison (PP) said, “I don’t talk about it at all…it is secret women’s business…It’s shocking…So it’s secret and it shouldn’t be” and Juliette (PP) said,
I was too embarrassed or too confronted by my condition to even tell anyone…I didn’t tell friends or family or anyone else because – I don’t know if it’s because it was sex related or vagina related, but for some reason I just didn’t know how to open my mouth and either ask for help or express what was going on.
In contrast to the accounts of silencing above, some women, especially participants with endometriosis, described talking about their condition and reaching out to seek support. Many women with endometriosis described seeking support from online forums, Facebook, or reaching out to leading advocates; “there’s Facebook groups as well Endometriosis and Me, and Endometriosis Australia” (Lucy, EP); “Facebook groups completely rescued me…Jill from Endo Warriors, oh my God, she runs this group that’s international on Facebook and if you message her, she will respond to you personally about any questions” (Susan, EP). While women with endometriosis described that they “feel like there’s like an endo movement really starting…everybody is talking about” (Nicole, EP), it was apparent that less avenues for support were available for women with pelvic pain. Participants with pelvic pain did seek support from online Facebook pages and found this helpful, but for some, the sharing of “negative stories…I find that it fuels my symptoms and fuels my anxiety, which then fuels my urethral burning” (Emma, PP). Women with pelvic pain also described more commonly that when reaching out they, “found it really, really hard to find credible information online… it’s so hard to find something that’s decent and credible” (Kate, PP), or that resources were “very general and very broad” (Juliette, PP) and that reading available information on Google, “scared me” (Alison, PP).