PMDD and endometriosis

[berry16]

Hi guys, thought i’d just ask some advice as last time I had some really lovely helpful responses.

So i was very recently diagnosed with quite severe endometriosis, stage 3 with widespread endometrium and adhesions between several of my organs. I was wondering if endometriosis and Pre-menstrual dysphoric disorder are linked? Or if anyone else suffers with both. Im 18 and have known for a while that something switches when i’m about to come on my period. Im in a very happy 1.5 year relationship which is lovely and healthy but every month i will SOB and SOB about anything very minor my boyfriend does and I’ll convince myself i’ll never feel better or different - then I can look back and not even remember what it was about! I genuinely feel insane from about 3 days before my period which can result in me feeling very depressed and having very false disillusions. I spoke to one of my doctors about PMDD but as i’m in such a long process of diagnosis with endo and vulvodynia it was brushed aside as something to not complicate matters more.

I’m currently on 20mg of amytriptiline to help the nerve problems in my vagina and was wondering if a higher dose of antidepressants could help? I’m also considering going on the mirena coil for the endo and hear this might help?

I’m just wondering if anyone has any advice about what I should do about these extreme feelings before my period which sounds very much like PMDD. I may contact my GP or would you advise I speak straight to the gynocologist?

Thanks a lot, any advise would be greatly appreciated

[wanwood]

I hope you get some more responses, but for me, I’ve also wondered about whether I have PMDD and I had stage 3 endo excised. Similar to you I feel everything is hopeless 2 days before my period starts. The thing that has made a difference for me is not having a period at all. I’m currently on the progesterone only pill, never taking a break, and also breastfeeding an older baby. I don’t think I’m having a menstrual cycle. It’s great. The Mirena coil may have the same effect, could be a good idea. You may want to avoid having periods if possible from an endo point of view so win-win.

If you go to the GP do your research and present them with your preferred solution eg taking antidepressants the week of your period only (or whatever it should be? I have read about something like this as an option but can’t remember what exactly was proposed). I don’t know how good gynaecologists are with the mental health side of things whereas it’s bread and butter stuff for GPs, but if you’re seeing the gynaecologist soon anyway it would definitely be something to ask about.

Hope this helps and I hope you find a good solution and feel better soon! x

[berry16 in reply to wanwood]

Thank you so much for your reply! Yes I had thought the exact same about the gynocologist because in my experience they haven’t been brilliant with dealing with the mental health implications. That’s interesting that you have a very similar experience - maybe it’s linked through hormones and perhaps where/how severe the endometriosis is. I’ve heard such mixed reviews of the coil that it’s really tough to make a decision! I think I will trial it out because i’m reluctant to go on the pill again due to my aversion to it last time.

Thanks a lot for your help, it’s nice to know someone relates!

[snowflakemidnight]

Hi, I don't have any advice unfortunately but just wanted to say that I relate a lot to this. I was diagnosed with endo last year (don't know what stage yet, but I suspect 3 or 4) and I also have PCOS and I have always really struggled with severe PMS, and have frequently wondered if I have PMDD too. It wouldn't surprise me if they are linked.

As my periods are so irregular due to PCOS, when they do happen, I get PMS for a long time, up to about two weeks, sometimes even longer. I become like a different person during this time - very little energy, lots of sobbing, sometimes very dark thoughts, very snappy and grumpy, and I get all the unpleasant physical symptoms of PMS too, particularly bad bloating, digestive issues and sometimes very painful breasts. It makes sense that wanwood has recommended not having periods. There were times in my life when I naturally didn't have a period for many months, once even a whole year, and I always felt so much better then. It's as if having periods just makes me sick, both physically and mentally!

Anyway, sorry I don't have advice as I'm struggling with some of this too, but just wanted to let you know you're not alone. I wish you all the best. xx

[berry16 in reply to snowflakemidnight]

Thank you so much! I’m so sorry you’re suffering with this too - it can be really tough to go through especially with such a combination of diseases. I may bring it up at my next consultation but as everybody knows with women’s health - it may be dismissed. Hopefully not having periods will help as you say and I really hope you get some relief from this too!

[Fortyoneandcounting]

Hi I don’t have any advice really but my consultant said it’s highly likely I have endometriosis (ectopic pregnancy resulting oopherectomy and my Fallopian tube was covered in scar tissue plus my symptoms) she won’t do a laparoscopy as she said it will only cause more scarring. She believes I also have PMDD. I have had it for years. Horrendous up to ten days before my period. I’m in my third week of prostap injections so hoping this helps.

[Fortyoneandcounting]

Oh also I tried the coil a couple of years ago and it made everything worse but obviously everyone is different and it does work really well for some people. It’s a case of trial and error unfortunately.

[Warriorspoonie]

Hi there, I have both conditions, I’m sorry to hear that you are suffering so young. Endo, wasn’t diagnosed until a couple of years ago (I’m 44), but looking back on my medical records it’s clear that I’ve had it since I was about 20 or earlier? I have had severe PMDD since the birth of my second daughter 11 years ago, but also looking back I can see that I struggles through my 20s too. I just wasn’t very aware of my body. I also have a friend diagnosed with vulvodyina who has endo and PMDD. We were recently looking at endo on that nerve. It’s aparantly very rare but they say that about any endo that’s Deep infiltrating, I think because they are not looking at it. She is starting to realise the vulvodinya flare up cyclically.Some women get good results from the mittens coil for endo. Problem with both these conditions is they seem to require conflicting hormones.

Many women with PMDD cannot tolerate progesterone and require oestrogen to balance them out (although they have to have progesterone as a protective factor, but in low doses). The problem with oestrogen is it makes endo grow.

My personal experience has been that since having oestrogen to balance out PMDD, I feel much more endo pain!

But when I’m not on HRT my PMDD is so severe that It causes suicidal ideation. I do think I’m quite an extreme case.

There are natural things you could initially try like Agnes castes? Antidepressants can help too. You can take fluoxetine cyclicaly, ie in your luteal phase. The yasmin pill is also used for PMDD.

The problems I personally have found is that the two diseases seem to battle against each other in terms of treatment.

Ideally, the gold standard treatment for endo is laparoscopic surgery, so it may be that you require more surgeries as really we need the disease removed from us.

For PMDD there is an organisation called IAPMD which has lots of resources and a support chat option, plus there are helpful Facebook groups.

Usually for a diagnosis of PMDD I believe you are supposed to have symptoms for at least a week before your period? But please check this, also just because your symptoms don’t last as long doesn’t mean it’s not serious.

Where are you in the world? As then I can signpost you to good endo resources too.

Any more questions just ask. X

[berry16 in reply to Warriorspoonie]

Hi - really sorry i’ve just seen this but thank you so much for your response, it’s super helpful. This makes me feel much more heard and less alone. My current plan with the doctor is to try the mirena coil to manage the endo and try and slow any growth. However i’m not sure what impact this will have on the PMDD, i’ll keep a careful watch on the emotional side effects. Thanks again for your support.

[Endo_PMDD]

Hey Berry (and other sufferers). I have both. I have had bad PMS my whole life just as you describe but due to my diagnosis of Stage 4 deeply invasiv endo approx 1 year ago (after 19 years of severe symptoms and 1 x laparoscopy by a non endo gynae who missed it) I am on long-acting progesterone - Nexplanon arm implant.

Whilst my endo symptoms are dramatically improved, what I have unfortunately found is that it is like pouring petrol on a flame for the PMDD. It seems to just make my cycles longer, with a period approx every 4 months, the period lasting 21 days, and the PMS lasting 5 weeks. The depth to which the low mood spirals within 5 weeks has led me to have unrelenting intrusive suicidal thoughts, for which I have had to have quite intensive input from my family doctor etc, which vanish and back to normal mood during the period. We hoped I would become amennorhoeic on the implant and thus the PMD would not have a chance to rear it's hear but alas, no and the combination with progesterone intolerance is clearly quite bad indeed.

My gynaecologist has told me only other options are Zoladex (GnRH analogue, temporary menopause inducing injections) or ?coil but he doubts it will suppress my cycle if Nexplanon doesn't as the latter is stronger in terms of preventing ovulation. Depo Provera would be another option but obviously not going to risk stronger progesterone that can't reverse once injected/just have to wait 3 months to wear off. I have been reading about 'body identical' progesterone but from research so far only really available for HRT or miscarriage risk reduction as above, if you hear of any other options would be very grateful to hear! x

[berry16 in reply to Endo_PMDD]

Thank you so much for your reply, it’s good to know that i’m not alone but i’m sorry that you’re suffering too. My current plan is to try the mirena coil however i’m not sure what emotional effects this will have while being progesterone based. I’m sorry you’ve struggled with forms of birth control, i have too which is why i’m apprehensive. I’ll let you know how the coil works for me x