I've been operating under the misapprehension that I had Endometriosis for a year now as every doctor I saw said I was a textbook case and that had to be what I had. Well, I finally had my diagnostic lap this past Tuesday and it came back clean. (It was done by an Endo specialist so I feel confident he would have found it if it were there.)
I've been signed off of work since September due to how constant and how severe my pain has become. The more I try to do in a given day, the worse my pain will be. The only way to manage it is to stay down, keep a constant supply of awful pain meds in me, two hot water bottles always on hand, an electric blanket on the bed, and just do as little movement as possible from day to day. That keeps it from being cripplingly painful every day. It also keeps me from being beyond fatigued.
But this isn't a way to live! I'm only 34. I just got married a few years ago and I just got a great job with so much growth potential a year ago and now my life has been trainwrecked by near constant and severe pelvic pain coupled with severe fatigue, lower back pain, feeling like something inside of me has been pulled too tight, like a rubber band about to snap, if I stand up too quickly or often while walking, bloating so severe that it's uncomfortable to breathe and people frequently think I'm pregnant....
And now after cutting me open, it isn't Endo and no one has offered any suggestions as to what it could be or how to help me get my life back. All my surgical team has offered is a 20 week drug trial for gabapentin. I find it hard to believe they can know what drug will help when they can't tell me what is wrong.
I just feel like I'm back to square one. I'm way too young to be bedridden. I was a really active person and now I've lost friends, promotional opportunities at work, potentially my job if this keeps up much longer, and let's not even get into the strain on my marriage. My husband is an amazing guy, but this is hard, even for a great person.
If anyone has any suggestions about what else it might be or what else I can do to try and get my life back, I would be so deeply grateful. Thank you.
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JackieBo
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Could try looking at pelvic floor specialists or exercises as like you, my lap came back clear, so I've looked into other sources of my pain and turns out a lot comes from the muscles and bowels. Might be worth a few months of detailed symptom tracking and going back to your GP, as the pain I thought I had daily turned out to be only 2 weeks of the month when I really thought about it and worked on my pelvic floor muscles x
in reply to
Also I was offered the GaPP2 trial but personally tuned it down, I think it depends on whether it will impact on the amount of pain you have daily vs the side effects, in your case sounds like it could work but it varies from person to person based on side effects x Good luck!
I kept a daily pain journal from March to August and it revealed very clear patterns of pain running three weeks out of four each month with one week being my "good" week (aka I can walk my dog on short walks and do small errands without being in really high pain)
None of the doctors I've seen from GP to specialist has shown any interest in my pain journaling, which has been kind of frustrating because it makes it really clear that things aren't right.
Yeah, I totally get that. It's tricky to know where to go where to go after a negative lap but there are always stories of people having another one and there being something there. Might be worth trying everything they throw at you and even some of your own so you can go back with evidence that you've tried x,y and z and you're still in pain, then maybe they'll be more willing to do something about it x
The week opposite of my period. The week before sucks, the week during sucks, the week after sucks, and then the week opposite it is the week I'll have the most "good days", which at this point means I may be able to go two or three days without taking tramadol, maybe even take my dog for a short walk around the block on those days, maybe get caught up with some light housework.
Don't be misled though, I'm still not able to go to work or do anything close to "normal". It's getting really, really old. 😕
I had also been told for years that doctors were 99% sure I had Endo. I had a lap last year but they didn’t find, although they did find scar tissue and adhesions, just no cause of them. My consultant then refused to see me back despite the fact I’m also now in pain every day, but it gets worse when I’d be due a period. I’ve switched consultant and he’s doing another lap so I’m just waiting to hear hear when this will be. He’s still considering endo as he felt things weren’t explored properly in my first lap, despite the surgeon also having an interest in endo x
Yeah, for me, that's the one area I don't have much doubt in. My surgeon leads a research team and travels the world speaking about Endo. He's way more than just a gyno who has some experience in it. It's his career and all of his research. He showed me the photos they took. All my tissue looked pink and healthy and good.
I just don't understand how 60+% of women who have chronic pelvic pain can never get an answer and doctors think that's okay???
I'm with you on that last sentence you wrote. In this day and age how is it ok to be in pain. And the older you get,it's like well ,you don't feel pain.
I'm sorry you are going through this awful pain at this stage in your life. I found that doctors and even pain specialists have little understanding of how debilitating and life stopping such pain can be. I got my answers by going private to a specialist at a Bristol hospital. Best £300.00 pounds I have spent. He did not cure me but he gave name to my problem by ruling out what it was not. This saved so much time being past- around doctors and wasting time. He also recommended suitable medication I have been on Gabapentin for 3-4 years. My dose is medium high at 500 mg x4 times a day. Also a combination with Nortriptyline was brilliant with pain relief but as an anti depressant it was a bit brain fogging and after 8 months I decided to come off it. Unfortunately the result was that I had to up my Gabapentin to cover its loss. I am tempted to return to using it at times. I suffer from Rectal neuralgia which is greatly affected by what I eat. Like you warmth in that area greatly helps.
Not everyone responds to medications in the same way so it is trial and error. Also do not be fobbed off by' its all in your head' Basically all pain is a response in the brain to a stimulous in the body but that does not help initially when coping with pain. There is a book called ' A Headach in the pelvis. Written by an American. it is useful in understanding the pain mechanism in the body. It is more male orientated and particularly promotes his clinic in America but it is useful reading.
Keep searching. Listen to your body and be aware of what might cause worse pain or helps reduce pain. Keep a diary as such information is useful to medical staff as they are only as good as the information we feed them.
I wish you luck. Just putting a name to the source of the pain is a great stress release. And stress does increase pain levels.I think that is enough for now but please feel free to get back to me with questions. Take care. Joan
Have you been tested for coeliacs disease or oudendal neuralga. You descibe bloating and severe pain, try coeliacs testing and then see a gynaecologist who specializes in pudendal nerve pain. I have coeliacs and pudendal pain
Hi Jackie
Has anyone mentioned to you about the other disease of the womb, Adenomyosis? It's not supposed to be detected via lap as the cells grown within the endometrium and spread into the womb, not like endometriosis whereby the cells and adhesions grow outward and adhere to organs and tissue etc. I had endo in the past and was treated for it twice though my recent MRI showed my boggy uterus, all bogged down with extra size growth, lesions, Pitts and troughs, I could see them as my Gynaecology Consultant pointed to them on the computer screen my MRI scan was on. The womb can be 3 times enlarged or more or less. It can be present pre pregnancy or made worse by pregnancy. To give you the run down on my symptoms I showed my Dr once my toned abs then a photo taken a week later I looked 7.5 months pregnant with bloating pain and swelling.
The pain goes into my back the area of the coxics bone and around is often the worst. I get worse before a period and also have very painful periods and heavy. I've had a child and all have become much worse since the birth, monthly and progressively worse.
I had to go to a&e with so much pain in January, 2 trips and they explained that my lumbar spine is showing the same as my scan of 2 years past. Ie, they believe my gynae issues are causing me the pain. I have 3 bulging discs and on and off I'm pinching at different nerves in the area, even the sciatic nerve. My spine may be bulging due to this extra mass this boggy womb that has increased blood flow, swelling and so forth. The condition if you look it up gives the host chronic fatigue, depression and anxiety. I've been on Gabapentin a low dose it made me have no self control over my appetite. I raided the fridge and had no control plus didn't feel any pain relief. I was on co codemol Methacarbamol and Naproxen without much success and have swapped these for Maxitram. The later is working very well. If I am particularly bad I can take brufen or cocodemol on top of.
Please get an MRI scan if you have not done so already. I also get terrible pain and cramp all month long, I have terrible pain and trouble passing stool at the TOTM in particular. I feel like I have a heavy internal bum bag inside me and urinating I feel that bulge sometimes.
I'm in limbo land like you and my husband is coping like yours, though we are all coping an inch of what we can withstand as our son is a disabled toddler.
I know my cause at least and have an operation upcoming, with lots of thought I decided to go total hysterectomy. I am 39.
I am on the NHS waiting list since July and no date set yet.
If your cause is not Adenomyosis I wish you well in finding out your culprit.
I am in the same boat and it is awful. I can sleep 10 hours and still be so exhausted and fatigued. Always in pain and doctors act like it’s not serious and they can’t tell what’s wrong. How do you find a endo doctor? My obgyn acts like that’s what I have but the surgery did nothing but made everything worse. Don’t give up! Prayers to you!
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