Down, fed up and confused: Hi ladies! Hope... - Endometriosis UK

Endometriosis UK

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Down, fed up and confused

Lilybean profile image
6 Replies

Hi ladies! Hope you're all having good pain days!

I'm hoping that some of you lovely ladies can offer some ideas/ help/ insight.

My husband and I decided in jan to try for a baby so I came off the pill. The first month was pretty horrific with pain but my period was 28 days and relatively painless!

After that my periods came alternatively every 30 or 28 days.

I had an appointment with my specialist last month and he wanted to do a blood test to test hormone levels. I told him I was on day 3 of my cycle I had had a bit of spotting beforehand (sorry for TMI) and then blood when I wiped for the last 3 days although not much on my pads. However when I got home there wasn't anymore blood. So was that day 3 or should I count spotting and it was day 6?! Anyway he wanted to do another blood test on day 21 but we were on holiday so he said I could do it on my next cycle. However whilst away I started spotting and getting blood when I wiped and some on my pad. But this had come a week early!! I've always been fortunate and had regular cycles so I just don't know what's going on!

I feel so rubbish, all I want is to be able to tell my husband he's going to be a daddy but I feel like I fail him every month. And now I don't know what's going on or when to book my blood test to see if my hormone levels are screwed along with my insides! 😞 Sorry for the rant and long post just some days having endo really gets to me. I know I could have worse things though so I take comfort in that.

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Lilybean
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6 Replies
Hollibob profile image
Hollibob

Hey.

I have this joyful brown spotting/bleeding before my period kicks in properly too...

They say that your period is classed from the first day of red fresh blood as the other brown blood is old.

I feel your pain in regards to when to have the tests.

I got talking to one nice nurse once and explained that the brown spotting must make up part of your normal period as mine could be up to 5 days before and I'd have the aches before to indicate that it was on the way. My fresh blood would sometimes only be 2-3 days followed with maybe another 5 days of brown blood/spotting.

I was lucky that she allowed a test on day 1 of the brown blood and day 1 of the red blood just as a comparison really to see what's going on with your levels at those times?

In regards to my day 21 test...my cycles could be anything on average from 21-28 days so in my head, doing mine on day 21 was sometimes too late!!

If you have a nice specialist/GP then it's probably worth discussing the whole brown spotting with them, to see if they'll do the test on both days to see what the difference is. Stressing out will probably only make your cycle go haywire.

Also, it might be worth doing something like a fertility monitor to check your ovulation/peak days so that you have something to show the specialist? That should also tie in with the day 21 tests...

X

Lilybean profile image
Lilybean in reply to Hollibob

Thank you so much! It's just so confusing and stressful! It's never normally been like this only now when I need to have blood tests on specific days and I don't know what I'm on, typical 😕

Hollibob profile image
Hollibob in reply to Lilybean

I know, it's always the way..just like your period being late when you are due to start IVF or when you are waiting to have your baseline scan to say you can start your injections!!

:-(

Have you tried acupuncture? My lady managed to reduce my pre spotting days down quite a bit x

Lilybean profile image
Lilybean

Ah bless you! I'd find that even more stressful!

I'd not even thought about acupuncture but I'll definitely lol into it. Thank you! Fingers crossed for you x

Mabes profile image
Mabes

I understand totally! I'm not trying for a baby but I had endocrine testing and it also had to be day 3 and 21. Well identifying those days is so difficult!!!

I think this brown/red spotting 5-6 days before, then period, then more spotting, can be a symptom of endo as I asked friends who don't have endo and they just got a slight bit in the 24 hours prior to starting period or some got none at all and just started. Plus they had a definite finish.

The way I have identified my period in the past was pain and flow. For me the day 1 was so painful and the red blood started to flow (would be on more on pad or actually in toilet), whereas prior to that the pain was different not an 8-10 level pain and there was no flow (just wipe and a bit on panty liner type thing). In that respect it was a marked difference even though combining the spotting, my actual period and the post period spotting plus ovulation spotting meant I was nearly always bleeding to some degree.

Now I have the Mirena and it's settled, and I have had surgery, I have not got the flow so I really just have to go by when the pain changes. It stays more the wipe yourself/bit-on-the-pad stage. I seem to get the worse than my normal pain period pains with or without the flow!

There is an app you can track your periods and other symptoms with. This might help in conjunction with the ovulation monitoring that Hollibob mentioned. If you notice any increased pain or blood in toilet, this might be the start so watch for that. It is also worth mentioning to your doctor how difficult it is for you to tell and see what they say.

Lilybean profile image
Lilybean

Thank you Mabes! It's only been these last 2 months that it's all got confusing! I was diagnosed with endo 3 years ago but like I say my cycle had always been straight forward. What is the app called?

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