I have lost the old me.

[gillettj]

I was diagnosed with endo 7 years ago following a diagnostic laparoscopy. Ever since then I have had one follow up with a gynaecologist but serious amounts of GP appointments for pain management, mood swings, tiredness and have been on every anti depressant/anxiety pill going. I feel like I have reached the end of my tether with the ongoing pain. It has gradually got worse over time and now experiencing pain when I pass water, open my bowels, and I could just be sat there doing nothing when I jump out of my seat as it feels like a rod has just been shoved up my backside. My GP says to continue with paracetamol and naproxen...I am a nurse and know that long term that's not a good idea. But what else? These used to work but not effective anymore. Now today I have back pain, I feel like a hyperchondriac...like there is always something wrong with me. If its not menstrual pain, its back ache, if its not back ache, its headache and if I am bleeding I am moody and miserable. so for about 3 days of the month I feel ok.

I feel like I have lost the old me. Anybody feeling like this too?

[Hidden]

Has there been any attempt to treat the endo surgically, and do you know what stage your disease was? It sounds like it might be time to see a gynae again.

[Karendb]

I have to say I find Naproxen rubbish and don't help with my pains whatsoever. I'm now on Mefenamic Acid tablets 3 times a day and they do seem to ease the pains. I had excision 9 years ago and have been pain free (with the assistance of Mirena coil) since then....until now. My pains are back, hence why i'm on painkillers again. I'm awaiting an ultrasound (next Monday) and a new referral to the Gynae unit. My GP and I both think my endo is back, and I know this time it will result in a hysterectomy. I would certainly suggest asking your consultant/GP about other forms of treatment rather then just painkillers and anti-depressants. Keep your chin up

[Hidden in reply to Karendb]

Can I ask why you think you'll need a hyst? I have just had one and honestly, if mefenamic acid alone had given me pain relief, I would not have had the surgery.

[Karendb in reply to Hidden]

My consultant advised I'd need one within 5 years of my excision, I'm now 9 years down the line so I've done well to go so long. I still have mirena coil in at the moment, this one has been in place for almost 18 months. If I'm getting pains with that in, then there's no chance without it! I'm 46 years old, so children are not an option for me now. If having hysterectomy gives me a better, pain free existence then that's what I choose. It's affecting my relationship and generally making me miserable. Mirena coil has shut my system down for the past 9 years, I don't want to constantly be on painkillers and feel exhausted and washed out all the time so if I am given the option of hysterectomy then I will be taking it.

[gillettj]

Will push for a referral back to gynae, I was on mefanaemic acid for a while but gave me an upset stomach and the mirena coil was taken out when it expired and now my GP wont put it back as I couldn't tolerate it without a GA. I could barely tolerate my smear the other week, and even that triggered off 3 days of bleeding. Just feel so low with the chronic pain, and people really don't understand that its not just PMT/PMS it affects your whole life.

Thanks Ladies

[DBuckland]

I hear ya...I understand what you feel. I have lived in pain since I was 14 years old...I'm 37 now. I am a shell of who I used to be. I have a loving supportive husband, and two beautiful boys...but I sit on the side lines of my life in too much pain to participate. I have a 23 day cycle, 6-7 day bleed. I used to manage with about 5 days of mild pain or pain free (with the exception of my back pain which is 24/7) but as of the last 5 months it's been getting less and less. It's so hard to get up in the morning, most days I wake more tired than when I went to bed. I have no choice to get up, I have a soon to be 8 year old who must go to school, and a 3 year old who absolutely needs 100% of me. My husband works during the day...so I't just me. My in-laws live about 20 min away...but months can go by b4 they come to visit. My son now walks himself to school as I can no longer take him. I can no longer pick up my 3 year old, most days even holding on my lap is too much.

I feel your pain, as I am living it in my own life. Hang on...you are stronger than you know. HUGS.

[Hidden in reply to DBuckland]

Hello DBuckland.

I'm just reading your post here and as you're in this group, am I correct you assume you've been diagnosed with endometriosis? If so, are you planning for surgery to remove it?

Sometimes it's hard to believe endo can negatively affect our health in so many ways, but it does.

[DBuckland in reply to Hidden]

My GP and I both strongly feel it is endometriosis, I have not had a lap yet to confirm diagnosis. I do go see the specialist /surgeon tomorrow.

[Hidden in reply to DBuckland]

That is good to know you're going tomorrow! Take it from someone who had 7-8 ultrasounds and an MRI over the last 2 years, They will only show cysts and fibroids. It's good to know that too but only he scope will confirm endo: I finally had surgery for a mass within a cyst on an ovary, and only then was it discovered and removed. I was in so much pain for years too and last year I nearly left a very good paying job because I could hardly get out of bed in the morning. The fatigue was off the charts and I was in pain all day. I hope you have a good consult. If you want, let me know how you make out. We can talk again. Good luck!

[DBuckland in reply to Hidden]

feeling deflated, not heard...I am mad at how my appointment went and feel like I am somehow farther behind than before I went to see the specialist.

[Hidden in reply to DBuckland]

Oh no! I'm so sorry. So did you get to explain all your symptoms? Then What did he or she say?

[DBuckland in reply to Hidden]

Yes, and no. She first came in the room, and said that we were going to go over history and what not; but before that even got going she said "you've had 4 laps?" I could hardly get more than "yes" out and she says "well if you've had 4 I am not about to go in". In my defence I said "yes, Ive had 4, the first when I was 15 for endo search, the only one where I gave consent to have anything removed. The two middle laps were related to cysts and drainage etc. The 4th lap was an emerg lap for appendicitis...which ended up not being the case at all." Plus from the time I was 14 until 5 years ago I was on birth control, so the endo hadn't really been established by then OR the birth control had been suppressing it." its like that fell on deaf ears. She didn't even have the reports from my laps, at the end of my appointment I had to go out and sign a disclosure of information so they can get my reports from Kingston.

I tried telling her just how this affects every aspect of my life from just before ovulation til period end. I was almost in tears sharing how I am afraid to be intimate with hubby for fear of horrendous pain afterwards. How I can no longer walk my oldest to school any more and how I cant hold my 3 year old any more for pain. How I may have 3 "good" days out of a cycle, that lasts 23 days. I'm not living.

She said we should start birth control again. I said no. it messes with my head. I suffer with depression and birth control really plays with that. I told her I have been off of my anti depressants since Aug and I refuse to go back on them (yes, she wanted to put me back on them)

she said that until I have my MRI she cannot move forward. She gave me options of Visanne or Lupron.

I was so pissed off after my appointment. I was ready to say screw you I'm getting a second opinion. I called my doctors office today and spoke with her nurse, told her everything, told her the options given and that I am leaning on the Visanne. I may still go for a second opinion if I do this treatment and pain doesn't let up. I will jump thru her hoops for now. but if in 3-6 months she still says she isn't operating then I will be moving on.

It's just so ,maddening that the ones who are suppose to listen and help as a specialist in that area, are not even listening. I was made to feel like I was crying over a dropped ice cream cone.

[DBuckland in reply to DBuckland]

p.s last lap was 10 years ago.

[Hidden in reply to DBuckland]

Goodness that must have been infuriating. When you get to this level of pain you need help now not in 3-6?months. My opinion is that you would get a second opinion asap. Do you see any reason why you would not do that? I don't know how there can be a limit on laps if you are very sick you are very sick. Did your first endo lap showed endo? If so it does come back and if it came back before you were on the birth control, in my case, I stayed sick and it got worse.

[DBuckland in reply to Hidden]

I have my GP appointment tomorrow. I've already been on the phone with her (she had asked me to call her back after my spec app. ), she knows how my appointment went, options given and how I am feeling. At this point I am strongly thinking about having a second opinion and I will be ton the elling my doctor this. At the same time, I am hesitant to just refuse care from the present specilast and wait for second opinion. Meaning, even tho I think this doctor has dismissed me, I do realize they do have protocol they have to follow with everyone. I will start Visanne as was one of her two options after I refused BCpills (Lupron being the second). At least this way I'm not doing nothing while waiting for another specialist. After my appointment tomorrow I will know more and have a clear idea of how I am moving forward.

For this specialist to dismiss the thought of sugary just on the number of laps I've had in the passed. First of all My first lap was when I was 15, last when I was 26 (I'm 37 now), all while I was on birth control. Only the first one was to look for endo, the two in middle were for cysts, the last one was emergency surgery for suspected appendix. Second, my pain changed/intensified after having my second son at age 34, and then now since December just passed I am literally bound in pain from a day or two pre ovulation until after my period has passed. Not to mention that the specialist didn't even have the surgical reports, I had to sign a disclosure form for them before I left.

[Hidden in reply to DBuckland]

Ok. Hopeully as you think it thru and talk it thru you will feel comfortable with the path you choose. just please don't live with chronic pain thinking it will go away on its own. That may cause more harm to you if it doesn't. Take care of you.

[Tillyfloss]

Hi. I'm sorry your in so much pain endometriosis is a nightmare and I totally get what you're saying, I was diagnosed by chance in September 16 having been very lucky to not have any symptoms of it before. Have you been seen at a bsge centre? For pain relief you have to find what works for you, I take paracetamol, tramadol, buscopan which mostly helps accept on my bad days like today and amintytrine in an evening. I've been taking them since early Feb on a need to bases however after a very bad week in march the pain team advised to take them all the time till my surgery ( hopefully June). Do you find heat pads or water bottles help? Diet has helped with mine especially the bowel pain.

If you want rant or a chat just shout. Xx

[Hidden]

gilletj, I read your post and it is exactly what I dealt with for years and years. I can tell you with great certainty that you have options but act now for your own benefit. My first choice is A. You need to put yourself first and a) get another gynecologist asap! b) get a second opinion from another Gyno asap or c) tell your gyn you need a surgical consultation to remove it.

Sweetheart, I am a professional woman in a mans world and I suffered for years hoping things would go away on their own and I wouldn't have to take any time off. I too learned the hard way you. Eee to come first. Get it removed now or it will only get worse. Endo doesn't heal itself like some dr's hope ( mine too) after this amount of time. It gets worse and you hurt worse. I am 4 weeks post excision surgery. Still recovering but at least I have hope now. All the chronic and sharp pains you are having are killing your immune system too. I have a long way to go to be healthy again but at least that piece can't hurt me anymore once it heals. If I can help answer any questions you may have plmk while I am Still home recouperating.