Endo and lack of labido ruining my marriage!

I've suffered with endo now for over 23yrs. It's been an everyday struggle for me and all around me.

I've tried all the possible medication, pills, coil and I finally stuck with the Depo for 10yrs but that even stopped being effective. I've had 3 lap operations to remove and detach my bladder from my bowl. 

Through out this time sex has always been a issue. Painfall and unenjoyable! Predicable timed around taking painkillers! This coupled with high hormone drugs my labido has become non existent. I have two children thankfully after the battle I've endured. My husband is now also losing the will with my labido. It's ruining my marriage.

The final nail in the coffin was being put on zoladex with additional HRT drugs. The journey is only beginning because I'm due to have a full pelvic clearance. 

Is there anyone else who's experienced the same and know of a way to improve things.

My husband has been understanding but I think he's had enough now!

I fear the worst! 

4 Replies

  • Hi - your post raises two separate important issues. How we share what we are going through with those close to us and how they respond in terms of supporting us and whether you are being treated properly.

    In terms of treatment, you clearly have severe endo so first of all are you being seen in a BSGE centre as the NHS requires that severe disease is only dealt with in such centres where the surgeons have undertaken advanced excision training to enable them to fully remove endo? A pelvic clearance isn't a cure for endo because the endo that is left can produce its own oestrogen to carry on growing. Depending on your age you may have to take HRT which will do the same. You are likely to have adhesions and many have deep endo behind your uterus that sometimes can't even be seen at a lap and this typically causes pain with sex because it is immediately behind the cervix. The pain that causes for a woman when the penis repeatedly hits the cervix has been likened to a man having to endure sex while being repeatedly kicked in the balls. You might share that with your husband to try and illustrate why it is so hard for you to bear. A hysterectomy should only be carried out if the organs themselves are diseased but any endo must also be thoroughly excised by an advanced surgeon at the same time. Have a look at my posts on how to find a specialist centre, the treatment pathway, RV and uterosacral endo.

    Regarding the sexual issue I think many of us will have been there - dreading the time that we sense sexual demands are going to be made to do our wifely duty in the bedroom which is likely to be based on a silently understood time lapse between 'sessions' that are to be over with as quickly as possible with pain masked as well as we can manage while we bite our lip and stare at the ceiling. Once over we feel stress drain from us because we know we won't have to 'do it' for another two weeks or month or however long our particular accepted time lapse is. 

    But it's not really about the physical act or even the pain always - it is about us just not wanting to do it because sexually we feel like an iceberg. Apart from the effects of hormonal treatments, is there any wonder if something supposedly pleasurable causes the exact opposite? It is bound to turn us off. But this also turns off our emotional side too because for women sex is supposed to be intimately linked with an emotional bond and the fulfillment it brings that is not always about sex but about emotional closeness. This is not always the case for a man. There are some men who, no matter how much they may genuinely care for us in some ways, really do only see sex as something to release their sexual tension - those who hop on and off with no physical or emotional foreplay and really don't seem to get what women need. Others are totally emotionally involved and seem to have a great empathy with womankind and think only of the woman's pleasure and would without question go without shared sex forever if it pained their woman and would support them through thick and thin whatever it meant to them personally. So I think the first thing is to establish where your man sits on this scale in order to know how to tackle it and salvage what you probably sense is a failing relationship because you know it can't go on forever. Whether we admit it or not we are likely to feel resentful that we should be expected to endure what has become such an utterly awful experience just to satisfy the animal instincts of a man, which we may secretly feel a reasonable and sensitive man would satisfy by his own means without having to involve us at all. A sex therapist would no doubt point out that there are many ways to enjoy sex without penetration but the point is you don't enjoy it full stop whatever form it may take because you just don't want it, you just don't feel it. The more this goes on the more the resentment builds, the wider the emotional gap becomes, the less communication there is and the heavier the unbearable tension hangs in the air over everything you do. 

    So I think the first thing you need to do is ask yourself honestly if you want to save the relationship and if so it is time for both of you to start talking about it without fear or any sense of blame on your part that it is your fault that this has happened because it isn't. That is the first thing you need to do and truly believe it. You will know in your heart that the relationship will fail if something doesn't change and the starting point to recovery must be to start getting your resentments out in the open to reach a mutual understanding that this is a shared problem, not just yours, and must be addressed in a shared way that involves him learning all he can about what you have and why it is affecting the relationship in the way it is. He needs to be by your side as you go through the next stage of treatment hopefully through the more specialist care that you need and not to see it as something YOU need to get sorted for his sake. You would both find this book helpful by Dr Andrew Cook as it talks at length on the many ways in which women are affected and how to rebuild relationships after treatment. I think whether or not your husband is prepared to read it may help you understand where he stands on things.x


    PS - I speak wisely on this because my ex-husband divorced me after 31 years of marriage on grounds of unreasonable behavior for ruining his life with endometriosis. By then I resented and hated him so much for treating me the way he had (mostly over sex for which he humiliated me in public) that I was happy that he took that step and am now happier than I was in all those years with no one to resent or judge me. So I do think you are at a watershed moment in your life and can alter its course by what you do now. 

  • Hi, sorry to hear this but it's very familiar to most of us to some degree so know that you're not alone. I'm getting married soon and I feel sad that our marriage will start with perfectly timed sex about an hour after painkillers - yuk. It's not that I don't want to do it, it's just the fear of how much it will hurt and the total lack of spontaneity makes it much less enjoyable. I really feel for you but I can also understand that the extra worry about what your husband is really thinking adds to the overall stress for you. Are you 2 really talking? I don't mean to say how you're feeling but to tell him how some of his actions make you feel? Don't take forgranted that he knows because we're experts at hiding our pain and fears. Most of all, look after yourself and be kind to yourself, you've done nothing wrong and you'll come out of this fighting eventually. X

  • I experienced the same, for years with no relief. However, last May, I discovered a treatment which has seemingly cured my endometriosis, PCOS, related pain, and ALL symptoms. Apparently, many of us are estrogen dominant (birth control pills make it seriously worse because of the synthetic estrogen) and the elevated estrogen in our bodies throws the body out of synch. I began using an over the counter progesterone cream, which is also available online. I used it religiously morning and night...into the second month of using it; huge results. No more cyclical migraines, horrible ovarian pain that lasted for days, cysts, or ANY of the terrible issues that I had been experiencing for years. I've currently been on it for right at a year and have never had such regular periods and been so pain free in many years. All of my migraines and 'sinus' migraines and allergies have quit too. I am not taking any birth control pills or anything that could possibly increase estrogen, as the progesterone naturally balances it and counteracts the effects of estrogen...thus, the ovarian pain from my ovaries being literally fried by too much estrogen has totally stopped... I first started experiences all of those symptoms with the use of birth control pills when in my early twenties...I am now in my mid thirties. Months after using progesterone the endometriosis, all symptoms of it, literally vanished as the elevated estrogen was no longer worsening it, etc. This is just my personal experiences but please consider reading up on estrogen dominance and the use of progesterone to counteract too much estrogen! It literally gave my life quality again and ended all of my pain and the constant sickness.

  • I totally can relate to your case and at some point I also felt giving up on our marriage for causing my husband alot of dissapointments not only on our sex life but also in my function as a wife. Everytime Im having my endo attack, not to mention the pre&post pain attacks he would not complaint but I can see in his eyes that hes fed up to see me in pain. He was supportive of me getting help and he always take care of me evrytime I will have my lap and recently after my sub-total hysterectomy. He was also hoping that my pain will end sooner so evrytime we make love he will not hear me say "it hurts" or "i can't". I try to make up on him and please him in the best way I could esp. when Im in my "pain-free" days. I just hope that it satisfies him more than it satisfies myself coz I love my husband and I don't want to end our marriage by giving up..I know its an extremely painful journey both physically and emotionally. I guess if there is mutual love, honesty and support it will make our journey alot more easier..

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