Endometriosis advice please

[Cookiemonster5]

Hi all, love reading your posts each morning on the bus to work, they give me hope and reassurance that life isn’t just rubbish for me but for lots of us and that there is a light at the end of this tunnel for many.

We have been trying to conceive for almost 3 years with no luck at all, had bloods showing I ovulate (very well apparently), an external ultrasound which showed a cyst but it’s not in the ebdrometrial line so they aren’t concerned, and a clear HSG with no blockages or obstructions. Hubby’s tests all fine too and we are both in good health, never smoked, don’t drink too much, do good amount of exercise etc. So fertility clinic have put this down as ‘unexplained’ and we are on the waiting list to start IVF in May-August next year.

However - this past year my periods have been horrific, I’ve needed time off work as I often am in so much pain I cannot stand. I have diarrhoea, constipation and just a general upset stomach for the week before and week after my period which is basically half of the time. I’ve been back and forward to the GP who although sympathetic has said that the only things I can do (other than a contraceptive pill) are take strong painkillers (I’m now on 60mg codeine 4 times a day, 500mg naproxen twice a day and paracetamol to keep it topped up). To me my symptoms seem like endometriosis so wondering if there are other tests that could be done if those I’ve had haven’t shown anything so far? How did you get a diagnosis? I just really don’t want this to waste a chance at the IVF or slow us down anymore once our time comes next year.

Thanks so much x

[Tugsgirl]

Hopefully Hidden can offer you some advice xx

[Hidden in reply to Tugsgirl]

Thank you tugsgirl I will try to help xoxo 😘

[Doglover7866]

Laparoscopy is the only way to know for definite. The tablets will be giving you a bad belly. I was referred to a specialist after going to a+e with similar pain. Hope this helps. I would try and get referred as it could also be a cause of infertility xx

[Cookiemonster5 in reply to Doglover7866]

Yes the tablets make the tummy a lot worse, but had the diarrhoea before them too which they said was caused by spasms from the pain. I’m going to try again for a referral for a laparoscopy as this seems to be what I’m needing! I’ve been close to a+e a few times now the pain has been so bad but actually not been able to make it into the car to get there!

Thanks for replying xxx

[Autumnmoon]

There is hope but you will need to have a laparoscopy to confirm endometriosis if IVF is suggested it can definitely work with endometriosis my daughter's baby is due in 6 weeks! after 5 long years of trying and loss surgeries etc she was lucky enough that IVF worked 1st time I am sending all my best wishes to you and hope you get the answers you need and the help to reach your dream x

[Cookiemonster5 in reply to Autumnmoon]

Thank you! These positive stories are cheering me up! All the best with the upcoming arrival of your grandchild! X

[Autumnmoon in reply to Cookiemonster5]

Thank you I am so excited x

[Lou9]

Hi Cookiemonster5 , I had very similar symptoms to you and I was diagnosed with IBS for years. The week leading up to, and during, my period I went between constipation and upset stomach and also passed blood through my stools (sorry 🙈) I also had terrible stabbing pains up my bottom which would leave me feeling as though I was going to pass out. I had so many cervical exams over the years while TTC and was told repeatedly I didn’t have endometriosis. I also had internal scans and again was told all looked clear. However, last year I had emergency surgery for a ruptured ectopic pregnancy and it was during this they found patches of endometriosis in my Pouch of Douglas which they said would explain my symptoms. I didn’t have any of the endo removed as my surgery was quite complicated. I then went on to have a round of ICSI that same year and I am pleased to say I have a 4 month old baby girl - so it CAN work even if you do have untreated endo. The consultant told me after my surgery that a laparoscopy is the ONLY definitive way of diagnosing endometriosis. It took me years to finally receive confirmation of what I already knew, don’t let anyone fob you off. Whilst IVF can still be a success with endo, you also need to think about your quality of life and whether you want to continue managing the symptoms through medication or if you would rather have it investigated and potentially treated if a diagnosis is confirmed. Sending you lots of luck and really hope you get your happy ending. 💕

[Cookiemonster5 in reply to Lou9]

Thanks for your reply lou, and congratulations on your little one! I’ve also had the blood in stools (another symptom) so think it is very likely and agree that I may need to just be a little more stubborn about it being seen too. It’s really good to hear that you have been successful though, my biggest fear is that we wait for the treatment and then they say ‘oh you need this done first’ or ‘this hasn’t worked, we think you may have endo’ 😩

When on the pill I had no problems, I’m just wanting to have a baby and get back onto it, but as you say it’s no quality of life, I spent a day of our last holiday in bed and another couple near the hotel room... don’t feel this journey will be an easy one so would love there to be a fix. At the moment feeling horrific during af makes its arrival even worse and more emotional!

Thanks so much for replying, x

[Hidden]

First of all sorry for your struggle, it is such a difficult journey.

I have endometriosis ( mine took a longtime to diagnose I won’t say too long !!!) When I suffered chronic pain my fertility doctor suggested a laparoscopy-best decision we made!!!

My symptoms were as follows ;

“Unexplained infertility “ no test could explain the reason we couldn’t conceive.

Pre period spotting 3/4 days before my period like brown/pink/red.

Bleeding between period cycles.

Cramping badly between periods.

Really heavy periods ( made me anaemic)

Severe cramping during period ( I was having to take morphine in the end)

Pain during pelvic examinations & certain sex positions 🙈

Diarrhoea & constipation running up & during period.

I also developed intolerances to gluten & dairy.

As Doglover has said endometriosis can only be diagnosed via a laparoscopy ( which is a surgical procedure) it’s not as scary as it sounds-I’ve had 3!!! You want any advice on them, feel free to ask me.

For us my endometriosis was the only issue & once it was treated we conceived naturally twice ( my first time was a chemical pregnancy & second time -I’m 9 weeks pregnant ) My endometriosis grew on pouch of Douglas, uteroscaral ligaments ( ligaments that support your uterus) & rectum. My endometriosis made implantation impossible but once I was treated we had a chance 😘

I would always encourage women to get endometriosis rules/treated with fertility issues especially “unexplained “🤦🏽‍♀️

Push for a laparoscopy, for fertility investigation & for pain & symptoms you are suffering.

Endo uk have a good template to record pain & templates. Too many women are made to suffer too long with symptoms, it is not part of being a woman & you don’t have to put up with it.

Sorry for the long reply.

Good luck, you know where I am if you need me xoxo

[Cookiemonster5 in reply to Hidden]

Thanks so much jess1981, I’m going to make a doctors appointment as soon as I can and look at getting this sorted!

[emmab178]

If you haven't had a lap before unfortunately you probably need to have one with a general gynae to confirm endo. If they find significant endo they should back out and refer you to a bgse specialist centre. With that much pain meds you can probably guarantee you have severe endo effecting your bowel. Can only tell with a lap.

If you have private health-care they will pay for your first lap. Choose your surgeon carefully (only two surgeons in the UK will ever operate on me after a general gynae decided to ignore the rules and 'treat ' my endo)

Theres a fantastic fb group that has the nhs treatment pathways for endo, questions to ask at first gynae appointment etc and lots of advice. I highly recommend to go there and read the documents and ask for advice. Your gp sounds like they are uninformed on the treatment pathway (not unusual! Mine didn't really know what endo was leading to late diagnosis). Will message you the fb group name

[Cookiemonster5 in reply to emmab178]

Thanks so much emmab178, will join the group and find out some more I don’t have private cover but am happy to pay for this - we had saved for a round of IVF and the fertility consultant has encouraged us to save this for if we were to want a second child and use our NHS entitlement first. Is there a way I can find out which doctors would be best? Thanks so much for your help x

[emmab178 in reply to Cookiemonster5]

Theres only two surgeons with the correct training and reputation that i would let near me. Not allowed to mention dr names on here but ive messaged you. Depends on your location, looks like Jess has a good one where she is aswell.

I was relatively lucky and didn't have any major of symptoms of endo. I didn't have time to go for another lap before ivf so went ahead and got pregnant first round. It can happen but theres one train of thought (thought only no research to prove it conclusively) that if the endo is there it creates infertility.

You are on alot of pain medication so probably best to get that seen and under a good dr for continuing treatment on endo before having ivf.

Good luck. Feel free to message me if you need anything help but the fb group know alot more than me.

[Cookiemonster5]

Thanks ladies, I went back to the GP yesterday, got an NHS referral to Gynaecology for further investigations. Going to speak with them today and find out more about wait times as may pay and get initial appointments done privately to try and have as much as possible sorted before May.

Thanks for your support and nudges in the right direction. All the best for your journeys xxxx

[Lizzielizzielizzie]

You sound as though you need an exploratory laparoscopy.