Newly Diagnosed

[Nym14]

Hi guys,

I suspected I had endo since being a teenager (now 29) but my symptoms were never bad enough for me to really investigate, and there wasn’t enough information available!

After suffering with much worse symptoms for over a year (since coming off the combined pill), going back and forth to doctors, I finally found a doc who took me seriously and didn’t tell me “it’s normal”

He sent me for a scan, which showed a cyst on my right ovary, and that along with my symptoms has made him confident that it is endo, and has now referred me to gyno. Hopefully for a laparoscopy to asses how bad it is. I have to wait three months for this initial gyno appointment now.

In the mean time, he has suggested going back on the combined pill to alleviate some symptoms. I came off it to get pregnant, obviously have struggled, and my endo symptoms have definitely got worse since being off the pill. So I guess it does help...

My question is, if it’s too much estrogen that is suspected to cause endo, how could a pill that has estrogen in it, help endo? Surely it’s adding fuel to the fire? I understand it has progesterone too which is our friend right? and helps balance? But adding estrogen and progesterone to an estrogen problem, surely still means there’s more estrogen than progesterone in your body? If that makes sense?

I can’t deny that my symptoms have got much worse since being off the pill, but I am worried about going back on it now. My doctor has no idea what he’s talking about and could not advise. He was googling it himself...

The pill will only be temporary to alleviate symptoms while I wait for gyno to asses the situation. Obviously my main concern is fertility as I am trying to get pregnant! So hopefully they won’t offer more medication to treat it, and go straight for the operation if it’s needed? Symptoms include painful bowel movements so I am concerned that it’s affecting me there as well as my ovaries, and this makes me worry that it could of spread around quite badly in there?

Also, since coming off the pill my periods have basically stopped. I go through painful ovulation every month, and then a week or so later I get brown spotting for a day. And that is my period. Doctor couldn’t tell me what that means as endo usually results in heavy periods? Has anybody else got endo and experienced basically no period at all?

I hope my rambling makes sense! And if anyone could offer explanations or advice that would be lovely, as many of you have found, my doctor has not been educated on this at all!

I’m sure I’ll find out more at my gyno appt... fingers crossed... but I am finding it hard to wait three months for answers to my questions and concerns. Thanks guys 😘

[Nym14]

Perfect explanation to the pill conundrum! Thank you so much! I now feel much more confident about going back on the pill. Amazing thank you.

I think he was a new doctor, he looks young and admitted that gyno problems are the area he’s least knowledgeable about.... still he’s the only doctor out of several who actually bothered to get me a scan and gyno referral. So I am thankful for that.

Everything I know about it has been my own research, and talking to other people with it.

I’ve been referred to gyno at southmead who apparently have a doctor with very good endo knowledge. Not sure about specialist, but I’ve heard they are good... if I don’t feel I’ve got the answers and care plan needed with them, then I will push for specialist referral for sure.

Thank you!

[Nym14]

Sorry it’s St. Michael’s Hospital in Bristol that I have been referred to. Do you know anything about experiences with them?

[MrsDash]

Hey

I’m fairly new to this too as was only diagnosed last month so I’m not that much help, but thought I’d add that I too am 29 and think I’ve had endo for years but the pill was mostly masking my symptoms. I came off the pill to conceive and they got worse. Mine started with painful bowel movements during my periods but now it happens when I urinate during my period instead. I had a laparoscopy last month which revealed endo on my bowel and bladder but none of my reproductive organs. I’m now due to have an MRI scan in 2 weeks and then a gynaecologist appointment to discuss options. I’m sorry to hear you’ve had trouble getting listened to. Endo is awful and it’s so rubbish that it’s so time consuming to diagnose. Lots of luck to us both x

[Nym14 in reply to MrsDash]

That’s really lucky that your reproductive organs are fine! Well... depending on how you see it I guess.

We’ve been trying for a baby for around 9 months, and with the cyst on my ovary, doc presumes it’s in my tubes, hence difficulty in conceiving

Also yes, hurts to poop on my period! So also thinking it may be on my bowels....

But I have only had the transvaginal scan so far, which only shows the cyst. So just waiting three months for the gyno appt, and then probably another god knows how many months before I can get a laparoscopy to actually get answers to where it is and how bad it is...

A very long time to wait for someone who already has depression and anxiety, and feels like baby making time is running out as 30 looms ever closer.

I so wish I had the money to go private!!

Good luck to you, by all accounts it sounds like your fertility shouldn’t be affected x

[MrsDash in reply to Nym14]

Thanks. We’ve been trying to conceive nearly 10 months so in a similar boat. I’ve been told (briefly by a doctor after my lap) that in theory I should be able to to conceive but it doesn’t feel that way when it’s been 10 months. I had a chemical pregnancy in June which is a good sign though.

I’m sorry to hear about your cyst. And also that it’s taking so long to get your appointments. I’ve been v lucky and only really had to wait about a month for a gynaecologist appointment, and then 6 weeks for a lap. Now waiting another 6 weeks between lap and a gynaecologist appointment to discuss next steps. I’ve been told that treatment is likely to be 6 months of hormone injections to shrink the endo before surgery to remove it. I think the gynaecologist is likely to say it’s a choice between continuing to try to conceive first, or have the treatment and try to conceive again afterwards (many months down the line). I’m going to simply say that getting pregnant is the priority and see what she suggests. Luckily my pain is only really during my period, when I go to the loo. So it’s horrible but I can cope so far anyway. I have also experienced spotting during 4/5 days leading up to my period since coming off the pill. Do you get that? Though my current cycle it didn’t start till the day before my period which got my hopes up that I was pregnant. I’ve been taking vit B6 and magnesium so maybe that helped as it’s supposed to help balance hormones. X

[Nym14 in reply to MrsDash]

I know it’s hard, but just remember that it takes some healthy people over a year to get pregnant. If the doc has said your baby making organs are unaffected and has said the same things in terms if fertility, then just try to stay hopeful. I know it’s so much easier said than done.

I would probably do the same as you in your position, and go for the baby first.

I’m the same in that my symptoms only flare up around ovulation and period, so for two weeks of the month I’m mostly ok, and can cope.

It just so happens that some of my symptoms seem to mimic pregnancy. Hot flushes, sickness, I’ve been getting massive painful breasts in the lead up to my period, so every single month I’ve been thinking I’m pregnant... it’s heart breaking. Then to find out it’s actually the opposite, and there’s something wrong with you... awful.

The weird thing about mine is that my periods have actually decreased?! Everyone says periods are heavy and uncontrollable with endo.

But I get one day of brown mush and that’s it... all this pain in the lead up to my period and then that?

Makes me worry that the real blood is getting stuck inside somewhere and making the endo worse

[MrsDash in reply to Nym14]

That is odd. I’ve not heard of that happening but from what I do know I think that endo is a very odd disease in that it can vary hugely. For example I was initially told by a gynaecologist that if I don’t have diarrhoea during my period then I don’t have bowel endo. I don’t have diarrhoea and yet I’ve just been diagnosed with severe bowel endo... I was advised after my lap not to google anything as it’s so different for each women. Easier said that done. I’m always looking stuff up even though it never helps.

As you say, typically endo symptoms seem to involve heavy periods.

I have never had heavy periods or anything unusual in terms of typical periods cramps. Mine are about 4 days with some cramps on the first day usually. Since coming off the pill I’ve have brown/pink spotting in the run up to it. Similar to what you say, it’s so disheartening when you have pre period symptoms which are so similar to pregnancy symptoms. I kept thinking my spotting was the illusive implantation bleeding as it’s EXACTLY as is described online. Then of course period turns up and, as you say, you’re once again reminded that you’re not pregnant and something is wrong. What has the Dr said about your light periods? Was it when you stopped the pill that it decreased?

[Nym14 in reply to MrsDash]

Yeh it started stopping gradually after I came off the pill, and has come down to near nothing now.

But I remember waaaaay way way back, when I was 18ish and first went on the pill, they put me on because my periods were very irregular and heavy. I’d get caught off guard and bleed through my clothes in school, which was horrifically embarrassing as a teenager!

“Just go on the pill, that’ll make them regular”

That could of been endo right back then... I could of had it for over 10years and never known because doctors answer is “take this pill” so they don’t have to investigate...

My GP has admitted to me that he’s pretty much clueless about gyno and endo, so had nothing to offer me about why my periods were almost non existent... 👍🏼

Very keen to see a proper specialist and get some answers and hopefully reassurance, but yeh, it’s a three month wait before I can see anyone who actually knows what they’re talking about.

So of course, while you’re waiting, you google the life out of it! Some reassuring things about women still having babies, but also some horror stories.

It does seem to differ with every woman, the only thing we all have in common is frustration at having to wait and pain in varying degrees. X

[MrsDash in reply to Nym14]

Ps thanks for the kind words re getting pregnant. You’re right about that. My sister in law and my cousin both took over a year to conceive their second children for no apparent reason. X

[KNJR4 in reply to MrsDash]

Hi all, I'm in the same boat. I'm 31, was diagnosed with endo at 28 in the US (moved to UK at 29). Am now trying to conceive and have come off all the hormones used to keep the endo symptoms at bay (NuvaRing, it really worked well for me and I loved it, or as least liked it better than other hormonal BCs). Ovulation (or my body trying to ovulate, still not sure if I really am) is very painful. BMs are sometimes very urgent and painful. Have been off the hormones since late June, no success in conceiving yet. Am on a waitlist for an Endo consultant, MRI , and fertility consultant. I must say that the NHS is really frustrating compared to the level of private treatment I'm accustomed to in the US. The waitlists are horrendous, and make you really anxious when you have baby fever. We have private healthcare options via my husband's company, but they disqualified my endo as a "pre-existing condition!" Could not believe it. I've been taking Vit D and Mg every night for the past 3-4 years (maybe it helps?), and now multivitamin in the morning since TTC. The only things that really make a difference to me are: drinking loads of water to stay hydrated (from the serious BM symptoms), making sure I eat a dark green veg every day (I make sure I have kale, spinach, broc, cauliflower or cabbage every day... cramps seem less severe...I realise this may be psychosomatic), and getting 8-9h of sleep every night (which is difficult with work and life). Really, self-care and saying NO to over-exerting myself has made the most notable change in my symptoms, though I still experience those mysterious, stabbing pains at random moments. Still not lucky in the conception area... some days I feel hopeful, some days not so much. It's comforting, but alarming at the same time, to hear that many others are working through the same challenges with the NHS system. If anyone has any luck or finds any good tips/tricks, please share!

[KNJR4 in reply to KNJR4]

PS: My laparascopy recovery was positive. I was very sore for 4-5 days, and by week 3 was feeling good. No symptoms at all for 4-5 months after was amazing, and then the same pains returned, in EXACTLY the same places, only a little less severe...odd how that happened. Don't worry about your lap! Your positive attitude will have a major effect on your recovery. Rest, get a comfy moo-moo with pockets, have lip balm, hard candy or jelly sweets (for the sore throat!) , Gas-X/simethicone (for the trapped gas pain in your chest and shoulders), and your hot water bottle on hand, and plop down in front of Netflix for the first week after, and you'll be fine. Start a mild yoga routine in week 3, and keep it up! Yoga keeps the stress, and therefore the inflammation, at bay.

[Nym14 in reply to KNJR4]

Hi Kristen, yes the main symptom with endo seems to be frustration at the NHS!!

Was it expensive to go private in the US? I’m not sure how it works over there. You all have health insurance in place I presume?

Good luck with the baby making! Sounds like you have everything covered for the time being, all we have to do now is wait....

I just keep calling for cancellations and manage the pain for now...

It does make you worry that time is running out for baby making, the longer the nhs takes to sort you out. But then getting stressed out thinking about that isn’t productive.

I’m just struggling with not getting upset about it all at the moment. But I think I’m still getting accustomed to the knowledge that I have it. Was only told a few days ago.

[KNJR4 in reply to Nym14]

Don’t be too worried, 10-30% of women have endo! And plenty of us conceive, we have to remember that!

In the US, I paid about $120 per month for private insurance and my employer paid the rest. Most companies will pay at least half your premium, even for an expensive family plan (which is roughly $450-600 per month total, so only 225-300 out of pocket for an entire family). Bear in mind that most jobs pay more in US than on UK, so really it is on par with what we pay for NHS care via our taxes. Well worth it because once I found a good gyno who listened and cared (only took from onset of menses at age 14 ... until I was 27... since endo is such a mystery to so many)... the access to care was so much better in the US.

With most insurance plans, you don’t need a referral to see a specialist. You pay a $20 copay for GP visits, and a $40 copay for specialist visits. You simply call the specialist and schedule and appointment. Wait times vary by the patient bookings with that specialist, so from 0-30 days typically. The Gyno who finally listened and understood, she was at a good practice in a teaching/research hospital. Bloodwork, ultrasounds, XRays and MRIs were all done in the same building, if not in the office or exam room. My co-pay for my lap in the top hospital in Georgia ended up being around $500. It’s miles better than NHS. Sometimes I kick myself for moving here, knowing I have endo and need extra medical attention.

That being said, endo awareness and GP acknowledgement of the difference in normal versus abnormal period pain is just as poor in the US as in the UK. Even female GPs and gynos shrugged me off for years. I was told I must have passed kidney stones 3 times, tested for Crohns several times, had a “vein” in my bladder cauterized under anesthesia, was told i had cyanide poisoning once (never let anyone test your arterial blood gas, ouch!), gallstone/kidney/colon cancer checks, MRI, CT scans, x-ray with radiolabelled dyes, basically a medical lab monkey... nope... just endo in the end.

I’m reading a book now called “Vagina” that is about the physical-mental-emotional connection of the female reproductive system with the brain. It doesn’t reference endo specifically but explains that trauma to the sexual system really affect emotional and mental state. To me it explains why we are so effected by the inexplicable pain caused by endo. It really can cause depression and make you feel broken.

Widespread acknowledgement that abdominal pain is not normal, improving medical treatment and a community of positivity are helping endo sufferers get healthy. We have awesome social media platforms to seek advise and sanity checks about what we’re experiencing.

[Nym14 in reply to KNJR4]

Wow that is incredible in the US!! We worry so much about losing the NHS over here, but if that’s the alternative I’d much rather have that!! So sorry we’re so shit over here.

I think I’ve been luckier than some in finding a GP to take me seriously, it’s only taken a year of nagging. Plus my friend has it too, so she didn’t let me give up! I also feel lucky that I have entered the endo community at a stage where there is now increasing information and research and awareness, and so much support from other sufferers!

So there are many silver linings to be found I guess, just have to try and think positively. Even though I want to slap people when they say that to me 😂

I think my boyfriend is struggling to understand why I’m SO upset by it... it does make you feel broken. I may have to find that book!

[Nym14 in reply to Nym14]

Is the book by Naomi Wolf?

[KNJR4 in reply to Nym14]

Yes!! it’s very long, i’ve been dabbling in it since June... but it’s good thoughts/experiences and some research collated. it’s defo a feminist book, sometimes she’s a bit extreme for me.

[Bdgjdjd]

How long you was trying to get pregnant before you got the diagnosed ?

[Nym14 in reply to Bdgjdjd]

I have been off the pill for about two years. But me and my boyfriend only just met when I came off it (I came off for reasons unrelated to babies) so we used condoms for a while, and then made the decision to start trying about 9 months ago.

I have been having symptoms for well over a year, I would say they coincided with coming off the pill. But the doctors didn’t take me seriously until I combined my symptoms with difficulty in getting pregnant.