period pain and ptsd

[ponyos]

Hello everyone. I have recently been grappling with the idea that I might have some level of ptsd from my periods. I get intrusive thoughts of when it’s made me sick, times my parents have been holding me to try and keep me awake and the time I was in hospital (the harshness of the lights, the nausea, morphine drip etc). Now whenever I’m about to get my period the tinest twinge of a cramp will send me into panic, I get scared of eating because I’m worried I’ll be sick and I cry a lot out of fear. When it comes I feel so trapped in my body, and for years now on the lead up I feel trapped in my room waiting for it to come because I can’t fathom getting it out of the house. It feels like this might be ptsd but I’m unsure. Does anyone else experience this? I feel like it’s probably really common but health professionals would be reluctant to admit ptsd could stem from something that is so normalised in our culture, when we obviously know the level of pain we experience is not normal.

I was supposed to have an MRI for uterine abnormality and endo but they lost it in the system and no one knows anything about it. I still have 46 weeks to wait until I can see the gyne about laparoscopy but even that I’m skeptical about. Had anyone tried acupuncture or osteopathy or other types of therapies for their stress and pain?

thank you for your time

[HolsBamboozledwomb]

Hi! I'm so sorry that this is happening to you. I know how you feel for years I felt like this, I had to fight tooth and nail for every appointment and for every test I had done. It's awful that we have to go through this with so little support mainly because noone really knows how to support this. I even at one point asked my GP to put me in a medically induced coma because I couldn't cope with the pain I was in all of the time because my periods lasted months at a time too.

I used alot of heavy painkillers, morphine, tramadol, naproxen, amitriptyline to manage to even get out of bed. I slept walked through alot of my 20s. I also went onto Prostap injections monthly which did help for a short time but as a side effect I had a prolapse, annoyingly 1 month before my operation.

I'm 33 now, I finally found a consultant who listened and was excellent at her job and agreed that a hysterectomy for my adenomyosis was the way forward, I'm at week 3 post op now and feel much better which I'm so happy about but also dubious as to what is going to come next.

Have you tried speaking to your GP with this, let them know how you feel and you can get a referral to specialists who deal with pain and managing mental health with pain. It may help you to feel a little more in control. Please know that you are definitely not alone in this.

[ponyos in reply to HolsBamboozledwomb]

Thank you for responding to me, it sounds like you’ve been through hell and back, I’m so sorry. I am on a waiting list to see a specialist in 46 weeks, funnily enough I was under that specialist two years ago but I was so young at the time I was two scared to have surgery so they discharged me. So I’m waiting to get back to where I was. I’m thinking of saving up to go private but definitely think I should go back to the gp about the mental health side of things. I just can’t deal with the anticipation, it’s not always as bad as it was when I went to hospital but the fear that it might be is tricky to live with. How was it having a hysterectomy? I’m only 23 so I don’t think they would ever give me one in case I wanted to have a child. But I couldn’t look after a child if I was in this much pain anyway

[HolsBamboozledwomb in reply to ponyos]

I think we all have, I think we're all absolute warriors! Because to live with Endo and Adeno is just hard and painful! I know, the slightest twinge and your just anticipating debilitating pain, it interferes with everything because it becomes so big you can't see past it and it's all that you can think of. Taking care of your mental health with a chronic illness is so important so whatever helps you to feel grounded, just do that, when I have been so poorly, I have painted, knitted and cross stitched, anything where I have to take my mind off of the illness and on what I'm doing.

Hang tight and see your GP as often as you need to and remember your not bothering anyone it's what they're there for (took me a long time to get to grips with that one) maybe speak to them about pain management too so you know you have options should the pain reach that level so you can manage at home and be completely honest with them.

I have been completely blessed with 2 children when I was told I wouldn't ever conceive so I am glad I didn't have a hysterectomy when I was 23 because they in my experience were worth the painful years I had before and after them. They made me fight harder than ever to be treated. So if it is something down the line you wanted to consider anything is possible, your stronger than you know chick 🧡

[HT267]

Hi Ponyos, I'm actually a CBT therapist as well as someone who has endo themselves. It sounds like you are having anxiety attacks and some symptoms of trauma. You can get trauma symptoms from any upsetting experience so it doesn't matter what anyone else thinks if its affecting you that way then it's valid and you'd benefit from support. In terms of PTSD generally this involves having flashbacks and nightmares but not always and you can always be traumatised without it being PTSD as ptsd is just one type of trauma disorder I hope that helps xx

[HT267 in reply to HT267]

Sorry just to add it's definitely worth going yo your GP to discuss this and getting some talking therapy support it can really help you to cope

[BloomingMarvellous]

Hiyah,

So sorry to hear things are so tough right now. As an acupuncturist I will say yes it's helpful and it's helped me in the past but here's the nub when it , the endo, gets its flaring clothes on and decides to party and you're in hospital you need something you can access immediately to manage the panic, stress and pain. More on that in a moment.

Next there are metabolic connections between depression, anxiety and panic attacks with endo . There is a gene NSPR that poorly expressed has an association with heart issues, OCD , anxiety, depression, diabetes, rheumatoid arthritis, bipolar and wait for it endometriosis. It seems to carry with it a need for higher levels of Omega 3 ( EPA/DHA version rather than ALA which is less bioavailable) for carriers to remain healthier and less prone to poor health outcomes. Often are diets are low in good quality Omega 3 at sufficient dose to manage the inflammation associated with this. There is plenty of double blind studies that suggest Omega 3 has a long term benefit on endo, its progression and pain levels. It also has great benefit for depression and anxiety. I found substantial nerve pain down my legs retreated using high quality at dose Omega 3 as although pretty up there my diet couldn't provide enough as a treatment dose. It can take up to 3 months to fully kick in but it was less for me. It also helps heal inflamed gut tissue which can be key in getting down pain levels and self regulation. So it's not just stress or anxiety itself but a physiological response. No amount of drugs or needling will fix that deficiency. If you want to read more about this and how to manage this aspect of endo try Katie Edmond's book and insta feed @heal-endo.

To handle pain I've found tackling it from the Centralised Pain Syndrome end really useful. You'll always have it available and no medic can withhold it and you'll never have to wait for them to dole out the pain relief. Sometimes you'll want both, but I wish I had known about it sooner. Try Curable App - go will give you a free script for six week trial or they do a two week one if you download and try it for yourself . Might sound woo- woo but trust me give it a whirl. Great science behind it. In that vein your GP maybe willing to trial you with centralised pain relief with the likes of amitriptyline or it's less side effect version nortriptyline . It has the advantage of helping sleep, depression and anxiety for a lot of people but some folk don't tolerate it well and it needs to be monitored properly over the trial period for unwanted side effects. The lowest dose for nortriptyline is 10mg taken generally in evening but I find just 5mg does it for me . It enables me to mobilise, exercise and look after myself and not be completely trashed. It enabled me to navigate the things that bring proper relief year round and much better mental health overall.

The third leg of the stool for me is the structur. Need to get the pelvic floor functional to its best ability. The tissue in the pelvic floor is weakened and impaired in movement with endo. The pelvic floor reacts by getting over tight . Rigid muscle is less able to bear pain. The uterine ligament often shifts and pulls much out of alignment causing significant pain. It's a BIG ligament the widest in the human body - try three fingers thick ! Proper pelvic physio is key and kegels can worsen the situation as can standard core work. Try listening to Dr Angie Mullers educational talk with @leahbrueg on her podcast number 52 or 57(?) great info on @corerecoverypt (discussion of hypopressives) .

Hope this helps, as ever check that any meds aren't compromised by anything you're considering doing and go gently on any new changes xxxxx

[painhater88]

I hate the whole week up to mine ane on the day i dread it even more and like you i'm scared of eating because of the sickness and won't go out the pain is that bad. I dread the next one before i'm even finished.

[cleth2]

I completely understand what you are saying. Please go and see a Homeopath, they will absolutely be able to make sense of what you are saying and hopefully treat you very gently but effectively. You can find one near you on the register of homeopaths. Good luck