Endo: newbie

[naryshkin]

Hi everyone!

I'm new here and recently embarked on getting my endo sorted. I've had terrible menses since my teens but nobody ever took me seriously. In 2014-15, any GP diagnosed me with IBS after results were inconclusive. Fast forward to 2018, Im now 28, with strong menstrual pains and post-spotting, ovulation pain, cystic acne (clearing up, scars will take a few years), bad bloats and the kit.

I already exercise and eat healthily following the IBS phase, and now made some minor tweaks to go fully vegan while respecting my endo. I think I've lost some weight elsewhere (bonier than before, quite slim from the start), although looking 6 months pregnant in the belly.

But the matter is, after two visits to a&e in June, the specialist gyn put me on desostregel (Cerazette) as I can't take combined after a catastrophic attempt in 2014 using Yasmin. Taking it religiously (punctually), I experience spotting, my hard endo bloat, and cramps on the right side of my abdomen. If I understand this, the pill is meant to dry out my endo, so would the spotting, cramps and hard bloat have anything to do with this? If so, how long does it last for? I have only taken this for a but more than a month now... I otherwise have no problems with the pill (yet?).

Sex remains painful, moreso than before, same goes for the bloat. I get terrible cramps and bloats the day after sex.

Before the pill, the pain was mainly reserved for the period or when I ate an IBS trigger. I'm seeking ways to get a lap asap, probably through private, because I'm starting a new job in October. I've postponed and cancelled my life since my teens, and I'd love to go ahead and do what I've dreamt of doing!

I'm wondering if anyone has been in a similar situation, particularly the combination of birth control and pain? Is it worth waiting for another 2 months, esp with this pain? Is it worth to have a lap asap?

[Mari123]

Hi! I have the same symptoms but with adenomyosis. I am sticking to the pill, hoping this is just a possible side effect as breakthrough bleeding and that the flare up will pass soon. Would be interested to hear back from you what your doctor recommends.

[naryshkin in reply to Mari123]

Hi there,

First off, apologies for the delayed response. I don't log in here very frequently, not as often as when on sick leave.

Following the Cerazette ordeal, my doctor put me on new pills as of 1 September because the mini pill didn't work very well on me. It got to the point where I'd have to take 3g of paracetamol combined with a lot of ketaprofen, due to the pain incurred from the pelvic fluid that had amassed from the cysts and excessive bleeding (which Cerazette had failed to address, in fact my bleeding increased from once monthly to the entire month, like heavy periods). As I was bed-bound for the better part of the summer, it was pretty clear to my doctor that it wasn't working for me. She then prescribed me Visanne, a pill that is designed to combat the inflammation incurred by endometriosis. It also prevents ovulation, which is very good on my poor liver. It took a few weeks until my situation improved and am back to work, which is nice. On the whole, I'm quite happy with Visanne bar the lacking sex drive, its high price tag (€50ish for a month) and the occasional tiredness but it's manageable. It is a heavy medication. What makes me happy is that the pain has subsided and I don't eat much painkillers anymore, but I will feel it if I am sloppy with eating, sleeping and exercise. But I plan on finding ways to get this covered by my work's insurance, since my country doesn't subsidise this pill thanks to the liberals and conservatives voting against a proposal to include it in state subsidised medication in 2013. Visanne is in a way relatively new but it has been in use since the 1980s in Germany, where it was discovered and developed by university professors. Bayer now produces and supplies this pill. Taking extra calcium supplements is imperatives because Visanne could contribute to osteoporosis.

I'm not being treated by the NHS anymore, having sought care abroad in conjunction with my move, after years of being fobbed off. From what I gather, Visanne is not available in the UK (or the US? Someone will need to confirm this). But the pill is available in many European, Asian and African countries.

[Mari123 in reply to naryshkin]

Thank you, Naryshkin, for a useful overview and feedback. I'm going to the Endometriosis Center in Austria on Thursday as my pain is now constant and I'm also fed up of taking painkillers. I will ask about Visanne, I think it's available in Austria.

Glad you are back at work. I still need to explain to my employer what I'm dealing with and consider how I can come with the numerous upcoming business trips...

[naryshkin in reply to Mari123]

How did the appointment go? Did you get your treatment changed? I hope it went well... Visanne is available in Austria, I had my gyn double check in case I'd need to continue the prescription there as I used to spend considerable time there with my partner who worked there (we were in a LDR at the time).

I was quite lucky on the jobs front. I was freelancing in the summer and started a new job in-house in October, so colleagues on either end don't know about my endo (bar the hospital part in June, which affected work quality but a vague explainer on A&E and sudden abdominal pain was enough to be left unbothered). They are aware I have allergies so they tread more cautiously when bringing food to the office (some trigger endo pain, but a vegan adaptation of the endo diet has been helpful). It's quite interesting how women's health is looked down upon, although it can be debilitating at the worst of times. Endometriosis is an autoimmune disease - and most don't seem to want to ask past the autoimmune part. Good luck coming up with something!

Hoping you feel better soon and adapt well to prescribed treatments

[Mari123 in reply to naryshkin]

Hello! Glad you found a job where you can work from home. You are very disciplined and strong to go vegetarian, I have only been on Endo diet for a month so far.

Thanks for asking about the doctor's visit. Endo specialist recommended to try Mirena coil, if I don't my kids asap. Have you had any experience with it?

I'm frustrated how the doctors' first response was "go try to get pregnant", as if this is a solution to Adenomyosis...

[naryshkin in reply to Mari123]

Delighted to hear the endo spec visit went well. I hope you feel comfortable and happy to go back in the future. I have no experience using Mirena, but many threads here that cover the topic. The bleeding and pain induced by the mini pill in the summer was severe enough to prompt my endo specialist to prescribe me Visanne, even if I don't plan on having children any time soon. It was much worse than what led me to the hospital emergency in June (aka my period). She had a few cases like this before, she said. Are you thinking of taking Mirena?

You champion!! Keep up with the endo diet! It's very hard at first but experiencing less to no pain is so worth it. It takes a while, from weeks to months (depending on the person). For me, it took a few months, but if I slip with the eating, some pain will return. By now, I know what triggers and what doesn't. Some foods that are listed as triggers in the endo diet don't trigger and some that are said to not trigger, trigger me. Just make sure to take vitamin B12 supplements for energy levels if you decide to go vegetarian or full vegan (calcium for visanne, magnesium for pain). Our bodies can't produce it and we rely on meat to get it.