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MEN AND ENDOMETRIOSIS

Let’s not forget about them

When I was initially diagnosed with endometriosis, I was living on my own. I did have a boyfriend at the time, although it wasn't anything serious. However, because I was so freaked out by all of the pain, and mood swings from the drugs, I managed to scare him away.

Actually, I think that I managed to scare several men away, and never thought that I would meet anyone who would be able to deal with my endo, let alone love me. So when I met my husband, you can imagine how scary it was for the two of us.

I didn't exactly make life easy for him, those first few months that we were together. He knew that I wasn't well, but I don't think he realised the extent of my illness or my pain.

I didn't want him to see me when I was really bad, so I would cancel dates, or send him home, before he saw how hideous it could get. Of course, this was really silly, because he wanted to be there for me, as much as he could. By sending him away, and hiding my pain from him, I only made life more complicated.

In the end, we both got a rude awakening as to how bad things could get. Within three months of being together, I had to have an ovary removed, and things went downhill from there.

We went away on holiday together to Turkey, where I think I gave him the fright of his life. I became really unwell, and was rushed off to see a Turkish gynaecologist in the middle of the night. Poor man, had to sit outside in the corridor, while he listened to me screaming in agony, while I was being examined by this wretched doctor. We had only been together for five months or so, and it wasn't exactly the ideal situation of getting to know one another.

Amazingly enough, he stuck with it, and somehow managed to cope with the ups and the downs. I can't say that it's been easy for for either of us. I know that he gets as frustrated as I do, and there have been moments where I thought the relationship would end.

I think that when we are ill, we become incredibly selfish and forget that there are people in our lives who do actually care and want to help in whatever way they can. We tend to forget that our husbands, partners or family are suffering from the repercussions of endo, as much as we are. They have to stand back, and look on, feeling helpless and hopeless, as much as we do. I know that they don't have to endure the crippling pain, or the hideous side effects of the drugs, but they do have to live with the consequences. It must be so frustrating for a husband to watch the woman he loves suffer, knowing that there is very little he can do to help.

Every time my husband asked me if there was anything that he could do, I would just shake my head and say no. I've learned now, to say yes - even if it's to ask him to run me a bath, make me a cup of tea, or to go out and buy me some much needed chocolate! At least he feels that he's doing something to help with my pain, however small it may seem.

Of course, there are still times when I push him away and shut him out. These are the times when I probably hurt him the most. I know that I'm doing it, but can't seem to stop myself. It's as though I don't want him to help - because I feel as though I rely on him too much already.

I used to hate asking him for help, and would rather have killed myself in the process, instead of admitting that I needed him to do something for me. And the more I pretended that I was all right, the more frustrated he would become. He would have much higher expectations of me, thinking that I wasn't in pain. He would think that I was coping, when all of the time I wasn't. Therefore, when I did have to go home suddenly, or leave a party early, he would be really annoyed. If I had been more honest with him, and told him straight up, how I was feeling, then he would have known what to expect. That way, if I didn't feel well, we could go home and he wouldn't be annoyed.

It's difficult to try to put yourself in your husband's or partner's shoes, to try to see where he might be coming from. I know that since I've been married, I have had to look at my husband from a completely different angle. This is mainly because my family are always asking me how he is, even when it's me who is unwell. I know that it must be stressful every time I have to have more surgery. At least when I'm out cold having the surgery, I don't know anything about it. My poor husband has to sit there and twiddle his thumbs, waiting all the while, for me to come back up to the ward. It must be really nerve wracking. I can't imagine how I would feel if it were him down in theatre, and me having to wait.

Relationships aren't easy at the best of times, and when you have the added pressure of an illness such as endometriosis to cope with on a day to day basis, life can become incredibly tense. Living with endo is scary. It's scary for us women, and it's scary for those around us. Men get just as scared as we do about our pain.

They're worried that the endo will never go away, no matter what treatment is used. They feel helpless, and have to sit back while doctors um and ah for months on end. While we're waiting for doctors appointments and miracle cures, the same thoughts and fears no doubt enter their minds.

I know that my husband usually ends up acting the fool, in order to break the tension. He says that if he can make me laugh, then at least it helps take my mind off the pain. I know that I'm incredibly lucky to have such an understanding husband look after me, and I don't know how he does it sometimes...I really don't.

Of course, like other "endo" husbands, he does get frustrated and angry. When I sent some questionnaires out, there was a definite theme running through the answers. These men wanted to help their loved ones so much, but kept coming up against a brick wall, which would only frustrate them more.

I think that the main reason why our husbands and partners stick by us, is because they are able to see beyond our pain and illness. They're still able to see the women they fell in love with, rather than women who are sickly and ill.

So, how can we help them, when it comes to living with our endo and pain? We can try to help them understand our illness and show them that we do need them, despite the fact that we may push them away. Educate your husbands and partners. Show them there is nothing to be afraid of - after all, if you can cope, then so can they. The stronger you are, and the harder you fight, you may be surprised to find your husband right behind you. Most important of all, don't shut them out. If you have problems then get help.

I know that my husband needs just as much support and encouragement as I do. I have to remind myself that he's only human, and can only take so much, before he cracks himself. I know that when push comes to shove, he'll be there for me, no matter what. In that respect, I am incredibly lucky.

I also know that we've had to fight all the way, and that we're still fighting. But as long as we help each other through this battle, I know we'll be just fine.