Help!

[Lauren1989]

Hi everyone. I'm so worried about endometriosis. I am 27 and after sex sometimes I get bad stomach cramps and trapped wind. Once I release the wind I am fine. I am really worried about not being able to conceive. I have the merina coil fitted. I do want to get pregnant but not yet. If I delay pregnancy will this effect my chances the longer I delay? I'm so scared any help would be great thanks! X

[VictoriaaPlum]

Hi here is my background before i answer your question.. I was diagnosed last year with Endo, im 22. I have been on the Pill for years after been diagnosed with PCOS when I was 16. I had a Lap to confirm diagnosis. It did solve my problem for a while but not near long enough. Since the lap my periods are so much worse, the pain is agonising to the point I can hardly move. Therefore, I have had my first course of Prostap injections today, where I am anticipating being on it for around 4 months.

In all honesty I wish I never went ahead with the Lap as I have had nothing but problems since. But that's just my experience, everyone is diffrrent.

I regularly get pain after Sex, I cramp up alot which has effected my libido. Being 22 naturally I don't want children yet, however they've basically told me I need to start trying now as it could take on average 8 years for me to conceive that's only a 25% chance of it happening at all. Have you been diagnosed or had a Lap? In all honestly, I think if you're in a stable relationship and are ready I would start now as endo only gets progressively worse. I am having the course of Prostap for 4 months to stop the endo. which then takes the drug 6 months to get out of your system. Of which I will probably then start trying, evening though it's not what I want now, I would never forgive myself if I didn't give it a chance and I left it too late.

A friend of mine who has previously done through this got diagnosed at the age of 32. She then tried to conceive naturally and with IVF and had no joy. She then had to have a total hysterectomy. She was told that if she had tried when she was younger it may have happened. Everyone is different though, it depends on your diagnosis and severity of the endo. Please don't let this scare you. I totally understand how you are feeling. Its demoralizing and you will feel like it's your fault, even though it's a medical condition that's the problem not you. Making these decisions are hard. I would go see a Gyne again and be honest, discuss your problems and your feelings! X

[Lauren1989 in reply to VictoriaaPlum]

Thank you for your reply I am in a stable relationship but my partner just is not ready. As we are saving for a house. I have just diagnosed myself so I am hoping that it is not endo and it's just something else. Thank you

[VictoriaaPlum in reply to Lauren1989]

Get yourself to the doctors and push for a referral to gyne. The only way of diagnosis is a Lap. But if it is Endo, depending on the severity you can plan around it! X

[Lauren1989 in reply to VictoriaaPlum]

Thank you. I need to go and get checked. Just really scared of the outcome and my partner leaving me. X

[Ardenrose in reply to VictoriaaPlum]

Victoria I'm sorry to hear that your symptoms have been worse since your lap. Do you know what sort of treatment you had? I've read that ablation of endo (where it is burned/lasered off) can leave the root of the disease behind and that excision (cutting the endo out) is more effective. Also sometimes adhesions can form when you've had surgery and they can cause pain.

A really good resource I found is the EndoMetropolis group on Facebook. It has so much info on all this stuff. Hope this is useful for you.

[VictoriaaPlum in reply to Ardenrose]

Hi yes I had both laser and excision during my lap. I am now on Prostap and can feel the side effects already!

[Ardenrose in reply to VictoriaaPlum]

I would definitely recommend checking out the Facebook group then. I'm no doctor and obviously don't know your full story but if you are still experiencing pain and other endo symptoms it could be that some of your endo was left untreated.

I know that not everyone is pain free after surgery but it is my understanding that outcomes tend to be more positive after specialist excision surgery. I had two laps with regular gynaes (using combination of ablation and excision) and then went for surgery with a specialist who was much more thorough and able to remove adhesions and disease which had been left in situ. I wouldn't even have known this was a possibility if I hadn't done my own research. Think that's why these forums are so useful for sharing experiences and info. I've learned way more from the endo community than I ever did from my doctors.

I wish you all the best and hope you can find relief from your symptoms. X

[VictoriaaPlum]

It may be nothing, it could well be IBS. If your partner loves you it shouldn't effect your relationship. Yes things can be difficult at times, my hormones have been all over the place and it has been strained but we get through it! You need to do what's right for you, getting the diagnosis can make things easier and give you perspective. Try not to worry, I know I'm a hypocrite saying that, but you haven't had a diagnosis yet. So it could be something thats treatable! Try not to over think things and get yourself upset. Just be honest with your GO, ask for support and keep getting advice from other who understand X

[Lauren1989 in reply to VictoriaaPlum]

Thanks so much for your help. Yes you are right it could be something else. I always think the worst. I know ivf is an option but I would rather conceive naturally like everyone else. I don't even mind the pain because it's not even that bad, just want a child. Sounds so selfish x

[VictoriaaPlum in reply to Lauren1989]

Its not selfish at all. You know what you want and there is nothing wrong with that! Talk to your partner about it all too!! I found that that was our greatest problem was that I didn't tell him how I felt about it and how worried I was. It kept it bottled up which made it worse! I'm sure things will be fine! Try not to worry too much x

[Lauren1989]

Thanks Victoria you have really put my mind at ease xx

[Ardenrose]

If it is endometriosis my advice would be not to delay trying to conceive. I put it off because I didn't feel it was quite the right time and I've regretted it ever since.

Hormonal treatments like the coil can mask symptoms not actually treating the endo. And endo can affect egg quality and quantity.

My advice would be to push for a diagnosis. A laparoscopy is the only sure way to diagnose. I've learned that only certain surgeons have the expertise and knowledge to recognise endo and effectively remove it. Excision surgery is now known to be the gold standard treatment (see the Facebook group EndoMetropolis for more info) so ask to be referred to someone who uses this method.

Good luck!

[Lauren1989 in reply to Ardenrose]

I've booked in at the doctors today hopefully to push this through that I need to see a specialist. If it is that then you're right I won't be putting it off and I will be trying to conceive. Xx

[Ardenrose in reply to Lauren1989]

All the best. Hope all goes well for you xx

[Lauren1989]

Went to the doctors explained my symptoms and she has diagnosed me with a water infection. I've not had any trouble going for a wee. Years ago when I was on my period I would get a shooting pain when I was going for a number 2. That has stopped and I have also had a colonoscopy with came back clear. Should I still be worried? Thanks! X