Infertility and Endo

[Topnotch12]

Hi all,

I have lurked here for some time and worked up to posting. I'm a bit lost with it all. For years I have known something was wrong but having been on the pill for over a decade thought maybe I had indeed 'grown out of it'. However, first cycle post pill and every symptom came back with a vengeance. Doubled over in agony and heavy as can be. I saw a doctor and asked for mefenamic acid as that's what I used to take. It helped with the heaviness but not so much with the pain. It also came with terrible side effects and took a long time to have any sort of effect. Eventually spoke to another doctor and they gave me 30/500 cocodomal seemed like a sticking plaster phonecall more than an actual listening and diagnosing/suggesting it was deep in Covid times so I get it. The painkillers make life bearable when paired with my hot water bottle and I'm at the point I don't care if people see me walking around school with it. Better that than having to cover my classes! I was 4 years off the pill and finally a doctor listened that we had grounds for agreeing we had fertility issues and was referred by a locum GP to have hormone levels checked as a first check. One was slightly elevated so I had hourly checks done roughly 3 months later which proved to be normal. The consultant said she thought this would most likely be the case. She referred me on to gynae as she said my periods history was not something I should have to suffer through unchecked. Also, it could be the reason for not conceiving. I cried when she said this as I had convinced myself I just have a low pain threshold. The bloods and hourly bloods happend during covid so I waited 17months until I got a text out the blue to have a gynae phonecall. This went well albeit quite fast and she said I should come in for a scan, I assumed ultra sound on the stomach. Wrong. It was internal which caught me off guard and wasn't pleasant, are they ever?! Haha. She said she couldn't see any fibroids or cysts but I should have a laproscopy. I'm now on the wait list which in normal times she said 3-6 months. However due to covid there are none taking place so I dread to think how long I will be. I guess I have three questions.

One: is it worth the laproscopy? I despise hospitals and even when I went for bloods I rather embarrassingly fainted.

Two: any ideas how much private care would be/how much quicker it is? I would be looking at going somewhere in Scotland.

Three: Any positive stories of conceiving with Endo / post laproscopy?

Thanks in advance and well done if you even made it this far! It's all a minefield and I haven't even touched on the bowel issues...

[Gardenist]

Hello I would say yes to the laparoscopy. Its a big procedure but can give you some good answers and treat you if it's not too extensive so you have more of a clean slate / less problems and pain for trying to conceive. I had 2 laparoscopies and was not given a good chance of having a natural pregnancy given what they found. The removal of the endometriosis helped me to have a couple of pain free years, before more grew. Very helpful for ttc! I went on to have 2 children naturally. It took a while each time but we got there. I went private for my 3rd procedure and was in in 4 days. This was pre-covid times though and in England so probably not too helpful for you. I just had the last of my reproductive things removed this week. It took 7 months from referral to surgery. Hope you get some answers.

[Topnotch12 in reply to Gardenist]

Thanks for the reply, that's good to hear. I have been referred on due to the TTC issues as opposed to the endo issues so it's nice to hear some positive stories. I have always known I had pcos or endo but through my own research of my issues Im almost 100% sure it's endo. Your story sounds very positive and exactly what I need to hear to keep myself on the waitlist and not back out so thank you.

[vizzle_01]

Hello, I am also on a waiting list for a laparoscopy and like you, thought my periods might have levelled out and not be as painful and heavy after being on the pill for years (15 for me) but with a few breaks here and there. However, this was not the case and even though my period is not as long as it used to be, the pains are more intense and I also have a lot more bowel issues and lower back pain before and after. My ultrasound was clear with no cysts or fibroids seen. I would say it's worth having the laparoscopy as firstly it's the only proper way of confirming if you have endometriosis or not. Also I don't know if you want children or not, but they can do a dye test at the same time in your tubes and make sure there's no blockages and they're healthy. I personally haven't tried to conceive I'm 33 and thinking I would like children in the next few years. If you are slightly anxious or faint around needles etc. you can discuss this with the nurse at your pre-op appointment. I haven't had my lap yet so I can't say anything on trying to conceive post lap. But I have heard it's possible even having a cyst and not having had a laparoscopy 👍🏻 Sorry I can't give any advice on private healthcare.

[Topnotch12 in reply to vizzle_01]

Thanks for the reply. We sound quite similar age and symptom wise. I get bad back issues too but never connected it to the endo until recently. We have been TTC for four years. Nothing. DR has said they will so the dye test that you mentioned as then they are better informed for what course of IVF. I get very grumpy at times as I just feel I got fobbed off for so long and could have been better informed years ago and then wouldn't feel the same stress that I do now around it all. Although this group has shown me that's very common and helps me feel better about it all in a strange way.

[vizzle_01 in reply to Topnotch12]

I know how you feel about wishing something could have been done about it earlier and feeling fobbed off. I actually even feel like my mum let me down slightly when I was younger, the pads she bought me were the cheapest ones and so rubbish I would leak through them into the bed and my clothes many times. Going to the doctors about my periods and possibly going onto the pill were never mentioned as a teen. I took myself when I started university to go onto it. I am so glad I have found this group now too 🙂 I hope you don't have to wait too long for your laparoscopy and you can get some answers xx

[EmaW]

Sorry to hear it’s all been going on for so long.It also took a few years for me to find a doctor who believed I had endo but when I did I was suddenly I was on the waiting list for a laparoscopy and it scared the hell out of me. Never had an op before and everyone was asking if the op was really worth the risks. It 100% was. Stage 3/4 endo diagnosed (but minimal removal)…I finally had an answer and options for treatment.The hospital and care I received was great and I was home again the same afternoon. It was scary but everyone was so reassuring and patient.

I had a couple of months pain free after the lap. We started TTC and got to our first IVF consultation about a year later where we found out the endo was so bad again it was unlikely I’d conceive without additional specialist surgery…then I fell pregnant the next month 🙂

I now have a 17 month old gorgeous boy and I am back on the pill continuously to manage my symptoms. I have been referred to a specialist as it’s all around my bowels etc. and just waiting for an MRI to determine what the next steps are…it feels never ending.

I did look into private gynae consultations in England earlier this year and I could get an appointment the same day but it was anywhere from £150-£300 just for the consultation. Instead I kept chasing my nhs appointment to see if any earlier ones opened up and one did. You really do have to take it into your own hands to get anywhere sometimes.

Hope you’re not waiting too long and you get some answers soon 🤞🏻 It’s such a difficult thing to live with, stay strong.

[Topnotch12 in reply to EmaW]

Thanks for the reply. Delighted and so chuffed for you and your baby boy. I think the one common factor of endo is how long everyone suffers compared to if we presented with say, a broken leg. I'm similar to you in that surgerynwqs suggested very quickly after all the years of nothing. I half expected to be pinged about and be made to continue to try other things first. Although I am very grateful this isn't the case the knowledge of knowing I need surgery makes me feel sick. However, trying to tell myself that I either except life and how it is until menopause or I take this next step and hopefully improve the quality of life I have. With a hopeful added bonus of children down the line. They do say nothing good in life comes easy...!

[Mugsy5]

For a good resource to cope with symptoms after you’ve gone off the pill go to drbrighten.com - obviously your endo is causing some of the issues- but she talks about post birth control syndrome and other female issues. Her website has been a tremendous resource for me as I’ve navigated my own female issues

[Topnotch12 in reply to Mugsy5]

Oh great, I will go and check it out. Have read a few period related books but never heard of this. Thanks