Endometriosis or pmdd

[KB08]

Hi. Iv finally seen a gynaecologist for possible endometriosis and I was so disappointed with the outcome. He basically tried to put me off having anything done and told me to take a double dose of my pill (POP) incase it's PMDD. Just wondered if anyone else has been told to do this and if it made a difference? TIA

[Moon_maiden]

Hi

There was an article in the guardian about not having operations for Endo if it can be avoided. Should still be out there with a search. The guardian have written several on Endo. This seems to have been picked up as a general thing, probably because of wait times. Have you had an MRI? If not get one done so you can get a rough idea of extent of things going on. Don’t let Gynae just dismiss you. It might help to take more meds, sometimes anything is worth a try, but stop if it doesn’t agree with you.

Hope you aren’t in too much pain and have a good Xmas.

[KB08 in reply to Moon_maiden]

Thankyou for your reply. I'm all for trying things just seems a bit of an odd thing to try. He told me an MRI probably wouldn't show much but I'm going to push for one because surely it would rule other things out. Thankyou hope you have a lovely Christmas too. Xx

[Moon_maiden in reply to KB08]

Definitely push for MRI and for those reasons, don’t give them a chance to refuse. They won’t in case they miss something. All of that is relevant and so important. Scans aren’t good at showing Endo, MRI is the best option.

Stay determined to find out and get treatment if need be 🙂

Thank you 🎄

[KB08 in reply to Moon_maiden]

Thankyou. I'll definitely push for an MRI iv got constant abdominal discomfort, lower back pain, pain in my legs and it affects my nerves. I get pins and needles alot. I also get really strange symptoms like sinus issues and random allergy like symptoms out of nowhere. Don't know if it's linked. I feel like no one knows what to do with me and its getting really frustrating. X

[Moon_maiden in reply to KB08]

Let us know how MRI goes, 🤞 you get one without hassle.

I take Duloxitine for nerve pain.

There might be a link, I’ve always had sinus issues, not as bad since hysterectomy, could be hormonal link.

[MyStar86 in reply to KB08]

The progesterone only pill is a recommended treatment for endometriosis as it stops the body producing oestrogen which drives endo. However I had Pmdd (prior to my hysterectomy) and endo however I could not take the progesterone only pill as I have an intolerance to progesterone so I wouldn’t say the progesterone pill is treatment for Pmdd sounds like an odd recommendation from a gyne!!

Hope you can get an mri as I was only diagnosed cis laparoscopy and have had multiple surgeries and total hysterectomy so you can have Pmdd and endo but Pmdd symptoms are just hormonal they don’t cause the pain endo does so I think your gynaecologist was fobbing you off so keep pushing for answers don’t give up yet xx good luck

[KB08 in reply to MyStar86]

Thankyou for your reply. Would you mind me asking how you knew you were intolerant to progesterone? I feel like iv been worse since taking it. Really greasy skin, horrendous cystic acne I get really painful lumps. Tender breasts and constant abdominal pain and discomfort. I contemplated coming off but I don't know what to do for the best as I had painful periods before going on it. X

[Hooplove00 in reply to KB08]

I’ve feel worse too, especially with my sky high anxiety. I’m just worried how I’d feel if I stopped taking it and if my pain would get worse 🙁 I still get my cycles too. To be honest, I bleed more on the pill than when I wasn’t on birth control! I also have PMDD. Not sure if it’s helping it or making it worse.

[KB08 in reply to Hooplove00]

I get really bad anxiety too and it's definitely got worse since starting the pill. I don't bleed but I still get all the horrible symptoms especially digestive issues. Don't know what to do for the best do you. X

[Hooplove00 in reply to KB08]

How long after taking the pill did you stop bleeding altogether? Yesterday at my Urogyno appointment they said that it’s common for some to still have their periods? But I’ve always gotten mine no matter the type of bc I’ve been on. The side effects of this pill is awful and I’m so sorry you’re dealing with them 😣

Xx

[KB08 in reply to Hooplove00]

The first couple of months I had erratic periods that only lasted a couple of days and then after that it just stopped. I have the odd spotting now and again. How long have you been on it? Iv been on it about 6 months. I'm tempted to come off it just to see if it improves any of my symptoms but I got the most horrendous gas pains when I had a period.

[Hooplove00 in reply to KB08]

oh jeeze! Does the spotting cause any flares? I’m coming on 8 months in January. Since my last cycle I’ve had spotting and have been passing clots 😬 I’m in the same boat as you because I won’t know if the the pill is the problem or not , til I stop. The surgeon was ultimately said I need to be on the pill continuously, so it’s like what if the bleeding is causing me more symptoms whereas if I’m off of it maybe I’d just experience the pain on my cycle only??

[KB08 in reply to Hooplove00]

I'm currently having a flare and I just feel horrendous. Bloating, gas, abdominal pain and pain in my legs and keep feeling like they are going numb. Also had headaches and awful fatigue. I just want to know what's going on inside me because it's driving me insane. But no bleeding 🤷‍♀️If you are still bleeding heavy and having other symptoms you might have an intolerance to it. Might be worth mentioning to your doctor. Always here if you need to chat

[Hooplove00 in reply to KB08]

I will DM you 😊

[Sunset-lady in reply to KB08]

An MRI can show everything if it's read by someone who understands endometriosis. My results were incredibly detailed

[KB08 in reply to Sunset-lady]

I'm definitely going to push for an MRI I get such bad abdominal pain and digestive issues and nerve pain in my pelvis and legs. X

[Sunset-lady]

I thought progesterone made PMDD worse! Am I wrong? I thought people with PMDD are super sensitive to progesterone.

[KB08 in reply to Sunset-lady]

You could be right as I'm sure iv got worse since being on it. I'll be sure to question him on this. X

[Endofitall]

POP especially double dose is the complete opposite of how one should treat PMS/PMDD. Please seek a second opinion.

Progesterone makes PMDD worse. Especially certain types of progesterone. Sounds absolutely bonkers idea.

Also how does PMDD explain your pain symptoms. Sounds to me like you need a lap. I had negative scans including MRI but my lap showed severe endo with rectovaginal endo.

I also have PMDD but the endo and PMDD are very different things.

[KB08 in reply to Endofitall]

He tried to completely put me off having a lap. Said it comes with too many risks and complications. I feel I need an MRI as surely it would rule out other things as well. He was so dismissive and patronising I might see if I can change to another gynae to be honest. Interesting what you say about the POP as I'm sure I'm worse since being on it. X

[Pantyline]

Hello, I’m so glad to see others mention this progesterone-only thing! I’ve no official diagnosis but suspected endo, ibs and depression (which I think are all linked or at least co-triggered by my cycle). I’ve been on versions of double-dose for about a year, and it’s mostly worked well for me (no bleeds, no pain).

Initially topped up my arm implant with continuous pop, then started getting really bad nausea and ibs and depression when the implant was on its last 6 months. Had that removed and started taking double pop (in the evening) off my own back as it’s off license. However, I found guidelines from Edinburgh and Oxford’s endo centre with that option laid out as a go-to during Covid times, when health professionals were unreachable or while waiting for surgery. I’m also back on antidepressants (citalopram, which amongst other things is also a recommended option for pmdd).

I’m due a first gynaecology review in June and hoping to discuss hormones and long-term viability. But until then, no bleeds, and my digestive stuff has settled down since switching to double-pill…

Really interested to hear your and others’ experience of non-surgical options (had traumatic birth 3 years ago and am really icky about medical settings and hands-on medical interventions since. The 15mn implant removal thing last month had me off-balance for 10 days).

Hope you find relief xxx

[Pantyline]

guidance on double-pop

ed.ac.uk/centre-reproductiv...

wrh.ox.ac.uk/research/endom...