If you could turn back time what would you change?

So I'm at (almost) the start of my journey through endo treatment and I'm looking for some advice from those who have had treatment already.

I don't know how bad the endo is, but my GP and gynae are pretty convinced that's my problem. I get excruciating pain on ovulation and menstruation. I can pin-point where my ovary is at these times and it burns all around that area. I've had scans and tests, revealing I have PCOS but nothing that would account for the pain (I know endo doesn't show on these things). I've suffered with this since I was about 12 (I'm 31 now). I had a mirena which took all my symptoms away (5 years pain free, but 3 years of depression) until I wanted more children. I've now got 3 gorgeous kids (13, 3 and 1) and feel very lucky to have only had minimal difficulty in getting them (natural conception). The endo was bad in between pregnancies, but I wasn't prepared to have treatment that could harm my children. Now my family is complete I really need to get this dealt with. My last baby stopped breastfeeding 2 months ago and the endo pain has come back with a vengeance. I've had no surgery so far, and other than the mirena, no hormonal treatments. I've been following the endo diet since January and while it has helped me lose weight and feel healthier (bloating is no problem at all now), and I think it has helped reduce some of the pain, I'm still in more than I can manage for about 2 weeks every month.

My question is this: what would you have done differently if you had the chance to start your treatment again? I've read that having surgery is the only way to diagnose the extent (and indeed existence) of endo, and the drs are keen to get me to have a diagnostic lap so that they know what they are dealing with. My symptoms suggest my right ovary is the worst affected, with possible issues around my right hip-flex area and bowel. However, I also know that surgery can cause scar tissue and adhesions, potentially making the problem worse. Even if surgery is successful, I understand that most women find the benefits of laps wears off in around 2 years, meaning it has to be done again.

If you've had a lap, did it work? Or do you wish you had never had that first surgery? Another Mirena seems like the least invasive way to go, but I'm not prepared to deal with depression again. I want my life back, not just a different set of symptoms. The dr says that pretty much discounts any of the hormonal treatments that induce/mimic menopause as that will almost certainly spark depression if I'm prone to it. Am I better off avoiding surgery all together and just taking stronger pain killers?

I'm so conflicted about this and feeling really drained by it all. The fatigue knocks me out, the dose of cocodamol (60/1000) that takes the pain away makes me drowsy and I'm so tired of being in pain.

Your experiences would be most welcome.

Thanks x

5 Replies

  • Hi, just read your post sorry to hear everything you have been through. My personal opinion is if I could do something differently it would have been, never having the mirena onthe 1st place. I had 5 in total over 2 years because my body kept on rejecting them. Eventhough they surpressed my symptoms temporarily, I feel that it has caused me more problems. I have recently been diagnosed with polycystic ovaries on top of my endo and after doing my own research, I have found that the mirena can result in PCOS. I have had 3 laparoscopys, 2 of them removing some endo. My last lap was under 2 weeks ago and I am feeling better already. I feel that the painkillers just make life impossible, as I couldn't carry out daily tasks such as driving.

    Basically overall the only thing that brings me relief is surgery, to remove the endo. I hope this helps and you find relief soon. I am also happy to give you my opinion and personal stories on any other questions you have, feel free to ask.

    Take care.

  • Hindsight is a wonderful thing... I would have researched endo more myself and not listened to the uninformed opinions of GPs (endo doesn't cause problems with getting pregnant/Mirena cures endo/take oestrogen pills to increase the chances of getting pregnant/Endo only hurts when you have a period so that's not your endo/you have stress related IBS and that fact that you experience it when you are not stressed just means that you are so out of touch with your own emotions that you don't even know when you are stressed) and I would have asked other women to describe what a normal period/cycle is like so that I knew what to mention (you mean, you don't feel like you have flu with swollen glands all over your body for several days before your period? Your eyesight doesn't go funny? the pain doesn't spiral down your legs into your feet? You don't feel sick? You don't visibly sweat with the pain? Sex isn't always painful?You don't feel like someone is sticking a broomhandle up you and into your insides? Or that someone has sewn a thread through your internal organs and is pulling them together? Or that some sort of creature has crawled inside you and is clawing its way out?)

    This would have meant that I would have known what was normal and what wasn't and I would have been able to go with a list of issues to someone who actually knew what they were talking about. And when I got there I would have stated how it affects my every day life and not got sidetracked by the focus on pain from one to ten. Pain has many different qualities. Banging your elbow hurts unbelievably but it doesn't last and you don't expect it to happen with relentless regularity and it doesn't make you so tired you could cry.

    Then I would have listened. I probably would have still tried the Mirena as it could have worked, but I really wish I hadn't. No way of knowing that was the wrong decision at the time though.

    Signed on the dotted line for my hysterectomy today and am convinced I should have done this sooner.

  • I was diagnosed in February via laparoscopy. The laparoscopy itself was fairly straightforward and aside from a couple of weeks recovery I felt good. However, three weeks after the lap, I was given a three month injection of decapeptyl. Since then I've battled depression and dry eyes to the point where I'm struggling to tolerate the pill because it exacerbates both of these symptoms. I'm not on any form of hormonal treatment now and can feel that my endo is starting to return. My advice would be have the lap so you low what you're dealing with but run kicking and screaming from anything that induces a temporary menopause - I started with one problem and now I have three!

  • Hi, Im not an expert but all I can say I had refuse surgery and any form of pills because Im intolerant to hormones and deal with the problem naturally.I have seen on this website a girl whi give advice about herbal pills, vitamin b complex and diet.I would suggest to try that first before going to that path where you have surgery you can't turn the time back., Did you try acupuncture? I come from a country that put more accent on herbs and natural treatment than anywhere in the word and first treatment given is a herbal treatment. We have herbs tea for this , pessary and all sort of this that Im in doubts that you will found here but as I said someone did give a natural treatment to ease the pain. So good luck.

  • I'd have stopped beating myself up about imagining it and refused to accept the many diagnoses of apparently incurable mental health problems. Doing so would have meant that I would not have tried to pin it on individual life events and people and probably saved a lot of relationships and my dignity.

    I'd have fought harder, probably got the real diagnosis much quicker, and not been left questioning whether it's really happening - even though it clearly is. The way I've been treated by doctors still leads to me thinking it's all of my own creation even now!

You may also like...