Endometriosis after children

hi everyone,

I'm new to the site and just wanted to say hi and see if anyone else has been told that having a baby might cure endometriosis by doctors only to realise sometime after giving birth that the pain is back and it was all just false hope?

It has almost been a year now and I was really starting to think (maybe naively) that the endo had gone and I could just get on with my life. But in the last couple of months the pain has come back, my moods have been getting worse and worse and now I've started getting those horrible headaches that feel like your brain is banging about in your head and worse still it's started hurting to have sex again!

I think I've been in denial for a little while now but the last week it's been so bad I've been doubled over at my desk at work putting on a brave face because I don't want them to think I'm going to be ill again and take more time off, especially as I've not long come back from maternity. So I've booked myself into the doctor to see how bad I've let it get and what I can do. But can't help feeling a little cheated by the doctors for getting my hopes up just for them to come crashing down....

11 Replies

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  • They should not have said that it might cure it.... its true that some women "get better" after having a baby but some women also spontaneously get better without having one as well.... and then it can come back... they do not know enough about endo to make statements like that and I am so sorry you have been disappointed.

    What pain medication are you using at the moment to manage these symptoms until the doctor can see you?

    *hugs*

  • Hi, yes I think we have all been told this my doctor's,gyne's etc,.. It is so wrong because you build that hope up and then it's totally shattered when the endo comes back. I think there should be some law against what they tell you, maybe this is a little harsh but when you get told its a cure and then it returns, you no longer have that normal life you have been dreaming about!!!!

    I have 2 beautiful girl's age 9 and 27mths, I have had 3 laps,last one they removed adhesion from my bowel I was then endo free for 3 whole year's!!!!! Me actually being normal.

    I I'm awaiting my 4th lap, which I had to fight for!!!! I lost 2 stone so I was down to just below 6 stone, I can't eat probley due to pain, urinating is so painful and when I have my bowels open its worse. I have had so many types of medication it's unbelievably, injections etc. Sex is so painfuland I feel so bad, I'm 30 and feel 80. I'm hopeing they remove all of it so I'm not in constant pain. I feel for you, hope you get it sorted soon x X

  • Thanks crystal, im always surprised by how little the doctors know about something that effects so many people.

    I'm just on ibuprofen and paracetamol at the moment until I see my doctor. I have clotting problems so can't take the pill and really don't fancy zoladex again I was a bag of emotions on that. Had the mirena before started trying for a baby which seemed to hope but want to try again soon so don't want that again, so really not sure what she can do for me, but worth a try I suppose.

  • I am on the same sort of mixture. A mix of paracetamol and Naproxen (a NSAID like ibuprofen) and Paracetamol.

    No one ever told me this so I will tell you in case you aren't aware: because of the way NSAIDs work you need to start taking them as soon as the pain begins and even just before if you can predict this.... so as soon as you start your period if you know for example that days 1 and 2 are the most painful then you can start taking the ibuprofen (or Naproxen) as soon as you come on...

    This is because NSAIDS work by blocking pain chemicals that are released and the sooner you start taking the NSAID the less pain chemical is released.

    Realising this made a HUGE difference to me.

    I then take paracetamol on top of it for days one and two as well

    I hope this helps you for the time being xxx

  • I would ask your GP for additional pain relief - there are anti-inflammatories like voltarol which are stronger than ibuprofen and you can add a low dose of tramadol or codeine in which should make a big difference, especially when you first start taking them. Tramadol is stronger so maybe start with codeine, or even the co-codamol you can get over the counter to replace your paracetamol.

    One huge thing - if you don't already have one, get yourself an electric heat pad, they are a huge help. Beurer make some excellent ones that fit around your pelvis area or lower back, but try to avoid the Dreamland one they sell in boots as its not hot enough. Theyre much better and lighter than hot water bottles and don't need refilling or reheating. You can use them discretely at your desk too. That should make a huge difference.

  • I'm so sorry to hear yours has come back so bad again (ilovemykids) I hope your lap goes well and they get everything! *hugs* I don't know about you but I feel so privileged to be able to have had kids and when it's really bad a kiss and cuddle from my little man is the best form of pain relief I have been able to find, even if it just takes my mind off it for just a couple of seconds.

  • Hi, Years ago I was told to have a baby, preferably within the next year to help with my endo. At that time I wasn't ready to have a baby. Two years later my husband and I started trying for a family. It took over a year for me to conceive. After 44hrs of labour I had to have a emergency section so my planned vaginal delivery (which I had been assured would make my endo better) went out the window. 12 weeks later I was pregnant again (despite being on the pill). My endo returned worse than ever within months. I'm now awaiting a hysterectomy at the age of 29

  • Ginger, have they told you that a hysterectomy will cure endometriosis? Or are you having the hysterectomy for reasons other than the endo? x

  • 15 odd years ago when I was having seriously heavy periods for weeks, pain etc. that it was because I was in my 20s and I hadn't had children!! There's no medical basis for this whatsoever - and I would have hoped that GPs would be better educated to know that now.

    I now have two children and after my second child my symptoms got much, much worse. After many trips to A&E with crippling pain, I had my first lap to confirm endo 8 weeks ago. They have taken away as much as they can, but I still have endo on my left ovary, bowel and on the scar tissue from a c-section. I'm not intending to have anymore children, but they wouldn't consider a hysterectomy for me due to setting off premature menopause (I'm 42).

    Mirena coil was also removed as my problems seemed to become far worse after that was inserted. I still have bouts of pain - but that could still be my body trying to correct itself after surgery. Started my first period 3 weeks ago - and still going. I did try some hormone tablets from the GP to stop the bleeding (norethisterone) - it stopped the bleeding, but made me extremely depressed after 5 days. I'm keeping positive, and I'm going to look at alternatives out there rather than surgery - diet changes, homeopathic medicine etc. Seems to be a lot of good advice out there. Good luck. xx

  • Pretty much every endo sufferer has been told that they should consider a baby as a cure - its shocking.

    The reason that this myth persists is that it stops the periods and specific hormone fluctuations needed to make endo grow for at least 9 months, longer if you breast feed. It doesn't get rid of the endo, it only pauses it, so as soon as your periods return, the endo will reactivate and start to bleed and grow.

    If your gynae explicitly told you that pregnancy is a cure, at the very least I would make an official complaint - no gynae with current knowledge would say this and he shouldn't be treating endo sufferers without getting more training. I'd also ask for a referral to a specialist as I wouldn't trust this persons knowledge of the disease.

    I hope things are more manageable soon and congratulations on the baby.

    Xx

  • I'm sorry that you're suffering at the moment, there is so kuch ignorance out there especially among Doctors, to tell somebody that pregnancy is a cure is simply untrue! It may only contain your symptoms until aftter the baby is born and you start ovulating again. My suggestion is to go back to the GP and ask for a referral, you do not have to try and manage this yourself! Have a look at endometriosis-org.uk website to see if there are specialists in your area before you go to the GP. Good luck, for further advice and support connect with other sufferes on Twitter search under #endometriosis #endosisters or follow my account @_EndoHappy

    Regards ????

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