Fertility and endometriosis... (POD)

Hi guys,

I've suffered with heavy and painful periods for about a year now and my Dr has now referred me for a pelvic ultrasound to further investigate the cause. (She's reluctant to 100% say endo because of my age) I'm worried that I have endometriosis (around the pouch of Douglas/bowel area from my symptoms) and Im really starting to panic about the effects that this might have on my fertility.

I'm 19 at the moment, (my partner is 22) and starting a family so early was not really a plan that either of us had initially, but we're concerned that if we leave it too late then we will never be able to conceive and having children is so important to us both. I was just wondering if anyone knows how fertility is effected by having endo in this particular area (as its not directly near ovaries ect) as well as your thoughts/experiences on how starting a family earlier has effected your chances of conceiving!

Although my boyfriend and family are supportive of me, I need advice from people who have been there and nobody I know has endo, so any personal experiences will be greatly appreciated. Thanks!!

8 Replies

  • Hi - I'm really not sure why doctors think young girls can't have endo. It baffles me. You can have it from the moment you pass puberty and so many ladies end up with severe endo because of such excuses by doctors over many years. The first thing is that heavy periods would normally herald the start of it so that indicates that you shouldn't have had it long so can now take full charge of your treatment to make sure you aren't one of those who are left years before proper diagnosis. Endo is an autoimmune disease so affects much more than the pelvis. Endometriotic lesions, wherever they are, communicate with your endocrine system to disrupt your hormones and this then has a knock-on affect on fertilty. So the best chance of conceiving is after a thorough treatment of your endo. Can you click on my name and have a look at my first post on endo and the one on POD endo to see what you identify with. An ultrasound is unlikely to show much beyond endometriotic cysts on your ovaries, but these are usually a sign that you will have endo elsewhere that can only be found at a lap. But a general gynae doing a lap often misses endo, especially in the POD that is a hidden place behind the uterus, so you can be told you don't have endo when you have and it can then progress for years untreated. Have a look at my post on finding a specialist. Regardless of what the scan shows if you know your symptoms are suggestive of endo then I suggest you exercise you right to be seen by a specialist and get on a waiting list asap. I will be putting a post on about holistic measures hopefully in the next couple of weeks that could help you so if you follow me you won't miss it. x

  • Regardless of whether you have endo or not the most fertile period of your life is aged 20-24. I wouldn't rush if youre not ready and you haven't even been diagnosed. I would go for the scan - it could be cysts, in the pelvic area can be very painful. The next step would be for a referral to a gynaecologist. They can put you forward for a laparoscopy - they can go in and confirm if you have it or not.

    I was 18 when I had this done after years of fighting, I was only referred as my endo was so bad it actually showed up on the scan. I know its tough. And you have to fight so hard. I was told at 21 that I couldn't have children... I'm currently playing princesses with my 1 year old whilst pregnant. Motherhood was what i wanted more than anything in life so I went for it straight away (was ordered to by gynae). If your ovaries and tubes are not affected you should be fine.

    I would definitely go for finding out what it is first, in case its something else. And so you know how serious it is. There are lots of treatments they can try first. Any treatments are contraception so dont rush to say you'll have babies - they won't treat you.

    Good luck. I know its not popular to have babies in your early 20s these days and it is tough but I wouldnt do it any differently. Plus I think having children so young is so much better on you physically. Your body copes better and you can cope on less sleep etc. Go for your treatment, book a great holiday and enjoy being 19 so when the time comes youre ready xxxx

  • If u do have endrometriosis depends on the stage if it is stage four then u might have to get help to fall pregnant but the pelvic ultrasound will probarly show up if there is cysts etc but will not show up endrometriosis I would speak to your doctor again and ask them to refer you to a gynaecology or ask doctor to refer u for a diagnosis laprostopy as that will be the only way to no for sure if u have endometriosis but I was told by my specialist the longer endometriosis takes to be dignosed the worse it can become I hope that this helps and goodluck as well

  • Please don't panic at this stage. My symptoms started around 12/13 and I was eventually diagnosed at 22. Although my symptoms are severe my endo is moderate at worst, and is usually worst in the POD. My first lap by my specialist back in 2005, he found that one one of my Fallopian tubes was stuck to my bowel and he managed to free it without any damage.

    That's the only issue I've had affecting my tubes or ovaries. I do now have adenomyosis which affects the uterus and a retroverted uterus but my consultant doesn't think anything he's seen should affect my fertility. I'm having another lap soon as it has been years since my last one and my husband and I want to start trying for a family (I'm now 32).

    Around 40% of women with Endo have fertility issues - that doesn't mean infertility, and many of them go on to have pregnancies after treatment. Some studies suggest that the presence of Endo can in some cases affect fertility, but that's not proven, and if it isn't affecting your organs directly you're far less likely to have problems. However, it's impossible to tell where or how bad the endo is from your symptoms, despite what you might have read - once you've had a lap or two and know where it has been before, it can be a bit easier to associate certain symptoms with certain areas but that's not always true.

    They won't say you have endo without properly diagnosing you, which means a laparoscopy, regardless of your age as it's impossible to diagnose it by other means. There are things that can show on a scan, like chocolate cysts, evidence of adhesions or sometimes adenomyosis which can indicate endo, but every single scan I've had bar one has been clear. even my first lap was clear as they rushed it and didn't look properly.

    What you absolutely do not want to do is have a baby as treatment, or rush into it because you think you might have problems later - you have to be ready, especially if you are in daily pain, have fatigue etc. It's a big decision to make.

    If you want to preserve your fertility, your best bet is a laparoscopy by an endo specialist where they remove as much of the disease as humanly possible, then go into the pill running three packs together (or have something like the mirena coil or Depo Provera) so you have as few periods as possible. If you're not bleeding, the endo isn't bleeding, causing more damage and spreading. This approach may not always work in the most severe cases, but if the disease is mild or moderate then it's quite effective. I'd always recommend the pill first as it's not as powerful as Depo, plus you can stop it and get back to a regular cycle very quickly when you want to - after stopping Depo and after having the mirena removed, it took many months for my periods to return. I didn't think the pill made that much difference to me until I came off everything 18 months ago - boy was I wrong, things are so much worse now. I went on the pill at 12/13 and really believe it's the reason that my endo has never had a chance to get too severe - the last 18 months have been the first time I've had natural cycles for more than a month or two.

    So basically, you may not even have it, but if you do and it's mainly affecting the lower end of your pelvis, it doesn't mean there will be any impact on your fertility - there's always a chance of problems, but if you control your cycle with the pill etc you should be able to preserve your fertility. Your main aim now should be getting diagnosed, getting any endo found removed (preferably in the same lap) and then going on the pill or similar until the time is right for you to have a baby. Definitely don't rush into it, and try to focus on getting answers now before worrying about this particular issue xxx

  • Oh, and don't have a diagnostic lap while taking the pill or other hormone treatments. I had one while on Depo and they found nothing but adhesions - I asked if it could be because of the Depo and they said no. Once my periods came back things escalated - I begged them to do another (about 9 months later) and there was mild endo but all over the place. Ever since I've made sure I've had a couple of months free from hormone treatments before laps so they can treat it as much as possible.

  • As cupcake says, please don't panic! It does irritate me that drs are worrying so many into having children when they aren't necessarily ready. I actually feel almost lucky that I wasn't diagnosed until l was 31 but even then, if I had been told it's now or never in my early twenties or late teens, I would have spent years worrying and possibly having children with the wrong person.

    I started my periods at 11 and had symptoms from a very young age but other than the fatigue, depression and bladder problems, never had them investigated until they were so severe, they were visible. (I had a lump). I am stage 4 with the majority in my pouch of Douglas, I had most removed (now learning should have had it done at a specialist centre but my surgeon was v.good and informative). Even at 31, the shock of discovering what was wrong and being told with my age and condition, I shouldn't wait to have children. If I was single, I would've been devastated, never the less, I wasn't ready!

    I decided to go on provera to stop my periods returning for 6 months to help keep the endo at bay and give us a little more time to think. We did decide to start trying following treatment and I became pregnant quite quickly. I stopped provera in June and conceived in November. Unfortunately through nothing to do with endo, I had a missed miscarriage at 12 weeks. We decided to try again and fell quite quickly (within 3 months) and I am now in very early stages.

    Of course, every case is different, no ones body is the same and no ones circumstances are the same, just do what feels right for you and your partner. Ensure you have a laparoscopy to confirm, l wish you lots of luck xx

  • I'm nearly 19 and when I had just turned 17 they said they saw spots of endo! I've had 5 laps in the past year and a half. It has a massive affect.

    Keep pushing them .. Age isn't a key factor, endo can be on women of any age.


  • they are now showing endo begins invitro...so if you have it...you have had it since you were in your mothers womb...Your Dr is clueless...find an endometriosis specialist!

    my pelvic and vaginal ultrasounds showed nothing and I was stage 4...only way to diagnose is through laproscopy...Hang in there, get to a specialist and then you can get your life back!

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