Can Endometriosis cause me to be infertile at 21?

Hi, although I have yet to be diagnosed with Endometriosis I have strong reasons to believe I have it. I have always suffered from regular heavy periods which have been extremely painful and physically and emotionally tiring on my body for around 2 weeks. Now however my periods have changed I am irregular and my periods are really heavy but only last for 1-3 days, although I get spotting and alot of pain for around 1 week either side of my 'lady week'. I also get alot of water retension and back pain, even during the time I am spotting. My mother, nana, auntie and cousin have all suffered from it from a young age. I have had a miscarraige at 8 weeks when I was younger, and when I was 19 I had a ectopic pregnancy at 9 weeks. I have not used any contraception with my boyfriend for the last 2 years as I was told I would struggle to have children since I now only have one fallopian tube. I am getting increasingly worried that my chances of having a child are slimming fast. I have been to my doctors quite a few times with my worries about Endometriosis and my fertility and keep being told that I should 'wait till I'm older before I worry about this' and also they wont refer me to a gynaecologist until I'm 25 as its 'most uncommon' . My cousin had to have an hysterectomy at 25, my mum and auntie and nana in their thirties. I am just wondering if anyone could let me know any tips on getting my refferal pushed through and also if anyone else has any information they think would be helpful I would really appreciate it? I refuse to look through website after website because quite frankly it just terrifies me but I would like to get advise of women going through it. Thank you.

7 Replies

  • Hi, you sound very simular to how my journey began! Heavy period but only fora couple of days but at least 2 weeks of pain, now constant! I ppersonally would make an appointment with a different doctor and having never used precautions, had a misscarage years ago and now know my tunes are blocked so it will never happen. I have found my fertility specialist more helpful than the gyni so could you ask them to refer you to fertility as after 2 years they should check you and maybe they will agree to do a lap and a dye test to check your tube is clear too. Knowing it runs in your family they should be taking you seriously so ask for a second opinion within your surgery, if not move to another surgery but don't give up x just to add I'm due to have tubes removed and will need ivf but endo doesn't always cause problems with fertility so don't panic there's lots of ladies that have had babies naturally and if not there are still options. The first thing is to get refered and know what your dealing with. Good luck and I know it's frustrating but eventually they have to listen x

  • Hey sweetie,

    These doctors can be terrible! I was once told by a doctor who had seen me once and not even read my notes that I "probably don't have" endometriosis, and that even if I did a laparoscopy would be "pointless" and that "all we would do is put you on the pill anyway"! All absolute rubbish. She was to be replacing my usual GP who was due to retire shortly and also told me she wouldn't be taking on my doctor's workload before she retired! Eesh. Thankfully after complaining to my usual doc she gave me the referral I'd be fighting for before she retired.

    If you are struggling to get anywhere I would try emphasizing the pain you are in rather than your fertility worries, your doctor has a duty of care to you to ensure you aren't suffering. Tell them you have a family history of this problem and you are positive it is endometriosis and your mind won't be at rest until you've seen a consultant/specialist at the hospital to discuss having a diagnostic laparoscopy (they will be able to diagnose you, check for fertility problems and may be able to excise or ablate any endo patches found depending on the location and severity all at the same time during the procedure). If you ask for this outright they'd have to have a pretty good reason to say no - to term the condition as unusual (which it isn't!) just isn't good enough. Be ready to be firm.

    If this doesn't get you anywhere, you could ask for a second opinion or change GP.

    Finally, does your employer offer health insurance? Could you get some private quotes to see if it would be an affordable option for you? I have heard Freedom are very reasonable. Nobody will cover me now as I have already been diagnosed, but as you haven't been diagnosed yet you should be okay and that would open you up to being seen by a private consultant. There are a lot of women on here that have had really good experiences going private - I bitterly regret not doing so when I had the chance!

    Hope some of this helps and good luck, Rach x x x

  • I am now in my fifties but my journey with endo and adhesions began with an ectopic (I think!). I lost one tube as it was furred up and kinked due to endo which was found in tube. A few years downline I had the blue dye test to see if remaining tube was damaged too. It also proved to be damaged and was removed. Various surgeries followed and adhesions (scar tissue formation) glued fallopian tube stump to bowel and ovary the other side to bowel. Adhesions became as big a problem as the endo. Zoladex injections to put me into pseudo menopause did not work for me, telling the gyne it was now scar tissue glueing my organs that was the culprit. I would suggest you save up £200 and get a one off private consultation with a endo adhesion specialist gyne and explore your options. You can then be referred back onto the NHS for treatment with the endo adhesion specialist in theory rather than a registrar or non specialist gyne. It can speed up treatment and will give you a more time with an expert to discuss the way forward. No disrespect to NHS consultations but your appointment will be much shorter and you will consult with whoever they have available, possibly a registrar or junior gyne.

  • You can get endrometriosis at any age mine started young say 14 but docs told be it was ibs only in 2011 when i was 22 did i have a laporscopy done and they said it was endrometriosis and adhesions which was very wide spread, i did have my first op done privately but they did also refer me on the nhs but we have private health care so we decided to go that route instead so i would be seen quicker. I also had really heavy periods this was before i went on the pill and used to be in bed a week in agony the time i was on my period not nice at all x

  • It doesn't necessarily mean that while one tube is damaged with ectopic and not usable that the other is bunged up with endo or adhesions. It might not be.. Endo if you have it, can crop up anywhere, and may cause you enormous pain and problems but not actaully be anywhere near the remaining tube and not any reason not to conceive naturally.

    You do need to have a dye test done to make sure the tube is clear, and if you cannot get that done on the NHS then save up for having it done privately. At least that way you will know for sure if that is a problem and can start saving up like blazes then for IVF if needs be.

    Good Luck

  • That's ridiculous! I'm 23 and have seen a gynaecologist numerous times. & had a lap because of endo. It can affect women's fertility but that's not always the case. I've had 2 children and I have endo. Please don't panic too much you'll be over thinking and over analysing everything. Defo see a different doctor as that one sounds a load of cods wallop. Also after 2 years of not getting pregnant using no contraceptive you should be referred to a fertility specialist to check everything's working correctly on both you & your partner. Good luck. Hope you get the referrals you need. X

  • Hiya Hun, I'm 20 and have the same worries got diagnosed this year, I have one child already but he is 5, a lot of pain and I have to constantly have contraceptive pills to control it, without the contraceptive all I do is bleed and I'm in agony, I had to see 3 diff gps to be referred again to the consultant, seeing him this week so will let you know how easy or hard he makes it, hope you get somewhere x

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