Endometriosis and fertility?

I am 25 and I was diagnosed with endometriosis by laparoscopy 8 months ago. I get severe ovulation pains and period pains, plus I get various levels of pain all the time. I had endo cells burnt away from under my ovaries and a few other spots, I have got an endo lump in the pouch of douglas which is pressing on my bladder and my intestines, this causes all sorts of problems, this lump could only be removed with major surgery- just to fill you all in. I am being referred for IVF, but my husband and me have always wanted children. Have people found that the endo tends to get worse over time? I don't want to get to the point where I have to say that I will have the hormone therapy and give up the chances of starting a family. Any advice would be much appreciated.

8 Replies

  • It is possible that the nodule of endometriosis could affect fertility and the hormones used in fertility treatment can worsen endometriosis. Do you have one cycle of IVF funded by the NHS in your area or more ?

    Endo worsens over time in some people, some stay the same and some have a period of remission. It isn't possible to tell who is in which group as there may be several factors influencing this. Getting pregnant and breastfeeding usually helps for those few months.

    Let us know how you get on with the IVF and good luck. We have access to a lot of expertise about this type of endometriosis ( nodules ) and fertility if you want specialist advice.

  • Thank you for the information. Yes I am aware that the IVF treatment can worsen endometriosis. I am hoping to find out I am pregnant naturally before then. I have got problems with my bladder at the moment that I am sure are not linked to the endo, but the hospital keep pushing for the IVF, but I would rather find out if there is another problem first. I have read that IC can be common with endo too, is this right? I have been having all sorts of bladder pains and burning only for the last 2 months though, I have had endo symptoms for years. Could the endo cause the same symptoms as IC? I need the hospital to do the cystoscopy, but the NHS seems to be cutting back too much and I can't afford to go private. Regarding the IVF I think it is 1 free cycle in my area. Thank you once again :-)

  • There can be considerable overlap between symptoms for these conditions, yes, but endo can affect the bladder too.

    Hope you can access the test : is your GP supportive ?

  • I know that when I had the operation there was no mention of any endo on my bladder, however I have got a nodule on my cervix, so they said that it is more advanced than they first thought. My GP has been brilliant, in fairness the hospital have too, but it's the waiting between appointments that always makes things harder. If my GP had been able to see me through to the end and get all tests done etc I am sure that she would have done, but her hands are tied like any other doctor. Don't think it helps with cut backs in NHS, they don't like doing tests, they would rather opt for surgery. I have been offered major, high risk surgery by one doctor, but a number of other doctors have advised against it saying that it is way too risky.

  • You're right about doctors and the system. Interesting what you say about surgery. I think it's very short-sighted to do surgery without as much information as possible. A huge amount of resources must be wasted because of this.

    It's a a hard decision for you.

  • Yes I think you are right. I had an ultrasound done after going to the hospital after getting pains, no CT or MRI scan was done to rule out anything else, instead they jumped straight into offering me surgery. I went to the hospital for the first time in the June 2011, then went back to see the consultant in August after the ultrasound didn't show anything and I had the operation in the October, I do think that they went in rather blind really. I am still trying to get a scan done because I am sure there is something else that is wrong too that isn't related to the endo. The problem I am finding is that the doctors are happy to run to the diagnosis of endo for every little thing! They are not doing normal routine tests that they would normally run because they use the endo as an excuse.

  • Interesting. This implies that endo is being regarded as an insignificant "catch all " diagnosis. In fact it can be anything but. Deeply infiltrating endo can be very serious and is often overlooked and of course there are other diagnoses with similar symptoms.

  • Thank you for all of the comments that you have made. You said before that there is information regarding endo nodules? I was wondering if it would be possible to have some more information please? At the moment I am considering going to a private hospital, but obviously cost is an issue there!

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