New to this Endo thing...

[JackieBo]

Hi folks, my name's Jackie. I'm 33 and have always wondered about women who say their periods didn't negatively affect their lives - were they magical lucky mermaids or just lying? 😉

Since I started menstruating at 11, I've always had periods that had me doubled over in pain, but my mom did too, so I just thought it was normal. I was on birth control from 18-25 and things were better. Then, I took myself off because I was concerned about the long term effects of being on artificial hormones. By the time I was 27, I remember consciously thinking to myself "well, you're getting close to 30, periods must just get worse as you get older. This must be normal."

Now, 5 years later, things have gotten drastically worse. Around my 32nd birthday, I finally acknowledged that things were getting significantly worse, something was changing. So I started to finally actually track my periods. By Christmas time, a clear pattern had emerged; while my periods were, overall, getting worse, they were decidedly worse every other month, more specifically, whenever it was my right ovary involved. The pain was acutely right side dominant. This isn't to say my left side MONTHS were a walk in the park, but they weren't "missing a week of work" bad, just caused me to miss a day or two, if I was lucky enough to start around the weekend...

Additionally, I've had severely worsening lower back pain that has been progressing for a few years now. I attributed it to my having scoliosis. I even recently saw an orthopaedic specialist to check my curvature as it hadn't been checked in about 12 years - nothing's changed. It isn't the cause of the excruciating lower back pain. I've also dealt with extreme intestinal discomfort and lots of bowel issues - again, I explained it away. I had had my gall bladder removed when I was 24 and have had terrible issues eating since then with a lot of pain, so I honestly don't know how I would have been able to tell the difference... I also feel like I've been constantly exhausted for a good year and a half to two years now. It's all the time. It's awful. I've gained a lot of weigh because I don't have the energy to exercise anymore. All these things got a lot worse after I turned 30 so I just told myself "well, you're on the wrong side of 30 now, this must be normal."

Then, in January, things got worse, way worse.

I just started a new job after the New Year and then, on the first day of my period that month, I woke up in the wee hours of the morning with cramps like I have never felt before - I ran to the bathroom and started vomiting. I called work and said I had food poisoning. I didn't know what else to do. That was on a Friday, luckily, so I had the weekend to stay curled in the fetal position.

February came, my period happened, not quite as bad as the month before, but then, after it ended, I had what felt like a constant low end cramp really low in my pelvis. It was really draining, but I managed to push through it and go to work. Then, one day, about two weeks into my cycle, I stood up at my desk and felt like a rubber band had been pulled to the point of snapping. It. Was. Bad. I managed to finish the last hour or so of work, but I was out for the next three days. I had so much abdominal pain and I was sooo bloated and puffy. The doctor thought I had a cyst burst.

By March, it's as if all hell broke loose inside of me. I had one good week that month, the second week in my cycle (which, coincidentally, wasn't good because my body chose that week to get a nasty chest infection so I STILL missed a week of work!?!!) I went to the local hospital and the gyno triage saw me (after I fought with the male ER doctor who was telling me I just had a UTI) and said I most likely have endometriosis. They put me on a strong hormonal dose of birth control and told me to wait a few months to see if it helps.

Since then, I've missed even more work. Currently, this month, I managed to go to work through the week before and during my period, with the aide of loads of pain killers and a constant hot water bottle, but I've been out the entire week after my period. It's as if that week is getting worse than my actual period now... it's been a quick and steady progression since January and I feel like I'm at my wits' end. I've read other women's stories who talk about pain during the week after due to the internal bleeding and whatnot, but nowhere does there seem to be any solution as to how to stop this.

This week during a follow up appt, I asked my doctor why this has been escalating so quickly. She simply said that "endo never manifests itself the same way twice" (essentially, she said no, she doesn't know why) and that I just have to give the pill more time as a month isn't enough to see if it'll work. This doesn't feel like any help! I'm in pain three out of four weeks a month now with frequent vomiting spells that last for a good four hours or so at a time. I have zero energy, I'm not sleeping well to boot, I'm missing so much work and my social life has become non-existent. We had to cancel our plans to celebrate my husband's birthday last month because I couldn't leave the house. We missed a wedding because, on the day, I couldn't leave the house. I can't plan anything even a week in advance because I don't know from one day to the next how I'll feel. It's taking over my life and I don't know what to do or how to get my life back. I'm in so much chronic pain at this point that I don't even remember the last time I felt normal. Most annoyingly, none of the doctors I've seen can seem to tell my why it's suddenly gotten SO MUCH worse. (Well, I mean, to be fair, it has been getting gradually worse for years now, but it seems like it hit some new level four months ago.)

I just don't know what to do. I feel like an absolute crazy person and I'm worried about losing my job due to the repeated absences. I even started seeing a therapist in January because I was feeling so damn depressed and overwhelmed and that's only gotten worse as the new year has progressed. I've had anxiety attacks on days when the pain flairs up badly - like, anxiety over it all starting all over again and I am powerless to stop it. I just don't know what to do anymore.

This forum was suggested to me as a place to talk and get feedback and generally affirm that I am not, in fact, crazy. 😉 sorry for the novel.... I just don't know how to explain this all quickly.

Anyway, if you've made it to the bottom of this long post, thank you for your time and hello.

[Hidden]

Hello, I don't know if this will help much but you aren't alone in how you are feeling, all of the ladies here understand what you're going through and how you're feeling.

The endo battle is such a hard one to fight but we must try to keep going, try not to let it take too much from us and to try to keep as positive as possible (I know it's hard).

From a treatment point of view it sounds like you would definitely benefit from having a laparoscopy, ideally with a BSGE specialist centre.

xxx

[Tillyfloss]

hi. How you feeling today? Your not going crazy this disease is pants and pushes us to our limits. Have you had a lap yet to find out what the endometriosis is up to? Are you on any pain relief other than the usual over the counter ones? I have found the Endo diet has helped with some of my pain but I know people it hasn't helped with so its a individual thing.

I'm sorry you've suffered for so long with it, I always feel a fraud on here as I only found out in Sept 16 I had it with little problems before. The surgery I had has triggered it and I'm regularly in hospital, awaiting surgery and have had to give up my job as I can't get down the stairs some days. I'm very lucky to have a lot of support or I would go stir crazy.

if you want a chat or just a rant this forum is brilliant 😊. Xx

[Starry]

Big hugs. You're NOT crazy I have a similar tale timeline wise, though I was on the pill about 5 years longer. Like you looking back the symptoms were all there just milder and so diverse and few were cyclical so no one put them together , despite cervix surgery and a trip to a clueless gynae consultant about Dyspareunia in my 30's.

I went to the GP in September suspecting a kidney infection and came out with a diagnosis of an RV endo nodule . Since then my symptoms severity has steadily worsened. Like you it's wreaking havoc on all aspects of my life. My hardest symptom is principally extreme fatigue though I do get pain too it's not as bad as some and I am not having periods at the moment as coil and zoladex have stopped them.

I think endo inflammation / nodules / adhesions must sort of reach critical mass where your body's immune system can't recover or fight it properly anymore and your symptoms just rocket up a gear or two. Also it can be about which nerve centre is triggered as most of the pain we experience is referred that is sent to a different part of the body from where it is actually caused, so that may be one reason why it varies. I used to get a 1 in 3 killer period with pain on one side and wonder if it wasn't to do with the tiny ovarian cyst that had stuck my ovary to the wall of my tummy which was separated in my first lap. it's hard to get your head around being ill when it's so invisible.

Take care. There is lots of support here. X

[Music1]

I agree with Starry.

Big hugs you're not alone. I had no pain at all with my period probably until my mid 20's. I couldn't understand how my younger sister claimed she was having so much pain every month and she couldn't function. However, when I turned 30 bam, it hit me like a brick. Severe pains on my left nearly every month to the point of I couldn't move, leave the house or do anything except curl up and stay in bed. I was repeatedly told it was kidney infection or IBS and take paracetamol and ibruprofen (which incidently made no difference). My quality of life was slowly deteriorating. For 2 weeks of every month I was great - for that week before and week during it was so debilitating.

It wasn't until I got tested at a fertility clinic (mid 30's) as I'd been trying to have a child and nothing was happening. I was told my tubes were damaged, I had large chocolate cysts, and when I had my first lap I was told Endo was everywhere, and my uterus was now retrograde and my bowels etc were stuck together with adhesions. I know I have Endo everywhere and since 2 laps my pain hasn't got any better. 4 failed icsi ivfs later (1 using donor eggs) and I feel like my body has given up on me.

I had a clueless gynae who did nothing for over a year - despite probably 2 monthly meetings she didn't even prescribe pain relief. I had an ultrasound which was 'unclear'. This was the reason I decided to go private and I was fortunate to be able to do that.

Now, I have days every month when I cannot do anything. I'm unable to eat as I can't go to the bathroom, have really bad constipation, cramping is like nothing else and I wonder if I can got to work or whether I will be able to function on those days when I suspect pain is round the corner. I had an operation on my cervix as well... which seemed to now be for nothing.

Endo is really debilitating, painful and affects quality of life and seems to always be in the back of my mind. I also have anxiety attacks when it flairs up, and sometimes I think it flares up with stress and anxiety so I can't win.

I try and manage my Endo pain by taking Tramadol 50mg upto 4 times a day when I need it. It's the only thing that works. Just sending you my best wishes and a hug. Nobody should have to go through all of this. (Hugs xx)

[JackieBo in reply to Music1]

Music1,

I am so sorry! That just sounds like an awful ordeal... and also frighteningly familiar. One of the biggest surprises in the past four months of quickly escalating Hades was when, well into what should have been a "good" week, I started getting pain again and legitimately had a panic attack on the bus on the way to work. I was so terrified it was going to hit in work and I'd be stuck far from home in excruciating pain. So I got off the buss halfway and walk/ran back home. When I got the door shut behind me, I pretty much just had a seat right there in the hallway and wailed. It just felt SO overwhelming. I had just gotten over my period. I was supposed to feel okay then. And the idea of it all starting over again just kind of broke me.

I told my GP about this and she recommended a "wellness" app. I downloaded it like a good patient and tried it as soon as I got home. It was supposed to do wonders for helping calm my anxiety over the impending cycle of pain... it was a dude's voice telling me he was going to help me "become more aware of my body" ..... as if I wasn't already hyper aware of my damn body.

Needless to say, it didn't help.

Honestly, reading the replies from you other ladies has been far more comforting than any of the doctors have been. It's nice to know there are people out there that get what's going on, that understand how awful and stressful this is. Sure, my friends are sympathetic, but they don't Get it they don't actually understand how Bad this is a few have been quite honest that they are getting frustrated with my inability to keep a date.... if they only understood what I was dealing with. That I'm not making it up or imagining it.

I think, over all, the most depressing thing about this is that there doesn't seem to be a clear solution, no absolute fix. That feels really overwhelming at times. But it really helps to know other women understand. Thank you all for your time and insight. I really appreciate it. 💖

[Music1 in reply to JackieBo]

Sadly I can relate to your panic attacks and sudden pain. I remember being sat in my car and taking 3 ibruprofen tablets with no water, drink or anything, simply because I was in so much pain, unable to move and had nothing to take them with. I was desperate. All I wanted to do was get home, but I was in no position to drive. I sat there in a car park for around an hour shaking. I now keep a bottle of water in the car - just in case.

I think the problem is, unless you are going through it, or you've gone through it, it's difficult to understand. If we had broken bones or something visible then people would be able to relate or understand it. Sadly, that's been my experience with my previous gynae consultant at my hospital and my current young female GP.

I don't think there is an answer. It is possible to have multiple laps but at the end of the day, Endo still comes back and if you have a hysterectomy then there are other issues. I'm not sure how effective being on the pill is, so I can't comment.

An app ... unbelievable. I have learned to manage my pain with Tramadol. I have heard they are addictive so I only take them when I absolutely need them. They have been an absolute godsend for me. I used to be afraid to go out, or away for weekends - just in case I ended up in severe pain, had a panic attack or was sent to hospital etc. I carry them EVERYWHERE. Just in case, but it's a 'piece of mind'. I guess when I do have extreme pain it's not doing me any good internally and most would say 'go to a hospital'. However, when I have ended up in hospital on quite a few occassions I've been given internal scans or ultrasounds and told it COULD BE cysts, a burst cysts etc. and get sent home and told to take pain killers. They do ask if I want to be referred back to the consultant who I have no faith in.

What I have learned.

1) There are so many of us out there and that's why this site is so helpful and valuable.

2) There are good days and bad days. On bad days, it's alright to look after yourself, listen to your body and be kind to yourself. If that means 3 or more days curled up in bed with a hot water bottle and pain killers then that's fine.

3) If you need time off work, you have to do it. Without your health we are no good to anyone.

4) Try to manage your pain as best as possible.

Please take care, there is loads of support here xx