Advice

Hi I am hoping someone can help us. My partner has suffered Endo for 30 years and has had various surgical procedures to deal with it. She is 43 and approximately 3 years ago she had her tubes clipped on the advice of her Consultant on the basis we would look at trying IVF and the fluid that flows from the tubes can be damaging to IVF treatment and was a possible cause as to why she had not fallen pregnant to date.

Since having the tubes clipped she has suffered abdominal pain and our sex life is nothing like it use to be. We recently went to see a private clinic that specialises and understands women that have Endo issues to discuss proceeding with IVF where she had an FSH test done which came back very low.

My partner is normally very regular every 23 days with her cycle but in the past 5 months as now she has been some 10 days late with no signs of her cycle starting but all the symptoms.

For some 8 years I have tried to understand her Endo symptoms, mood swings tiredness, independence in terms of shutting me out etc but the past 3 years have been tougher.

I have recently tried to find answers myself as to whether she could be going through menopause and there are a number of explanations as possibilities but one I have recently found is this PTLS (Post Tubal Litigation Syndrome) which when I read the possible side effects my partner seems to have had a number of them especially the flushes and tiredness loss of libido and headaches etc. She cant look at having the clips removed as this will not allow us to have the IVF treatment.

Could it be that the clips have caused this early Menopause or is it due to the fact she has more cycles through her life than say the average woman?

We have been advised to look at Donor IVF due to the chances of her producing quality eggs are less than slim but she is adamant that she would like to see if she can produce her egg for a child my fear is I am not sure she is physiologically strong enough for that :o(

I have read many articles on PTLS and it would seem it is not recognised generally but would like to hear from and couples/ladies/Men that have or are going through the same issues.

My partner due to the nature of the GP's attitudes she has seen over the years has very little faith in seeing them as they are exactly that "general" and have little time to try and understand her situation or Endo and its impact on peoples lives.

In summary my view is the PTLS has had an effect and the fact that her FSH is very low and her 3 late cycle point towards early Menopause but would be grateful if anyone can suggest anything else.

Thanks K

5 Replies

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  • Hi K - I'm not sure of PTLS, but menopause is indicated by high FSH not low, as more is produced to try and compensate for declining ovarian reserve. Abnormally low FSH can be caused by other conditions such as hypopituitarianism, where low FSH means that the ovaries are not signalled to produce follicles and therefore eggs, PCOS and a genetic condition caller Turner's syndrome where there is a chromosome defect. Since she has been having these long cycles recently this does suggest that she might not be ovulating and in view of the low FSH I do think she needs investigating for these other possible causes. Has she got any signs of PCOS such as weight gain, excess hairiness or low voice?

    The previous short cycle might have been a cause of infertility depending where in the cycle she ovulated, if she did. For an embryo to implant the generally accepted number of days required between ovulation and the next period (the luteal phase) is 10 days. Did you or are you doing ovulation tests? My cycles gradually reduced from 28 to 18 but my ovulation day remained the same at around day 13. So my luteal phase was just 5 days in the end with no chance of conceiving naturally.

    Ironically this low FSH is probably good for the endo since she won't be producing much oestrogen if her ovaries aren't being stimulated and you don't say what her current situation is regarding her endo. Certainly endo can cause infertility by various means, some known , some probably not. But you should be aware that IVF in terms of her own eggs will involve very strong drugs to stimulate her ovaries so I do think you need to get this looked into before she undergoes that. These drugs act on the pituitary and I think you need to rule out any potential problem with it. x

  • Hi again Kenny - I meant to ask what the FSH reading was just to check that it is abnormally low.

  • Hi Lindle thank you for your advice it is very useful but my partners cycles are usually every 23 days ish this is the second time in 4 months that she has gone 34 days but this time as yet there is no sign of her period yet she is getting the flushes and clammy feeling.

    I will find out her fsh score tomorrow but currently her symptoms are also constant bad headaches, occasional sharp pains in her abdomen and tiredness. With her tubes clipped is more than unlikely she will have fallen pregnant as we have done tests before more in hope than anything else.

    We think we might see if we can get her referred for an Mri scan as an ultrasound picks up nothing of significance we have been told.

    K

  • Hi K

    I had a look at PTLS and it seems the jury is still out on it, but essentially it is thought to cause a hormone imbalance. Hormone imbalance is also heavily implicated in endo, especially low progesterone and all her symptoms are typical of this - headaches, hot flashes, sweats, low libido, lack of periods - and it seems the only way to know if the PTLS is a likely cause would be a reversal to see if things went back to normal.

    You don't say how long ago she had surgery for endo but I'm guessing it has probably been in general gynaecology so probably that has been treated as effectively as it could. You mention an MRI and if that is for endo then presumably that is still a concern. Neither ultrasound no MRI will necessarily pick up endo - they can but they can't rule it out - only a laparoscopy can diagnose it definitively. If you are both wanting to pursue investigation for endo then you would be best to get a referral to a specialist centre who would try and maximise her fertility as well. Have a look at my post on how to find a specialist centre - this may be your best place to start.

  • Hi Lindle thanks for your help. unfortunately my partner cant have a reversal if we want to pursue IVF as we have been told the fluid produced from the tubes is likely to be what is causing the egg/embryo (not sure of the technical term) to stick to the wall of the womb. We are going to see the doctor this week and see if we can get referred so i will look at your listing also as well as contact the private clinic we have been to re the IVF to see what they say. Thanks K

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