Any advice - could this be endo?

Good afternoon. This may be a long post but I am hoping if I put everything out there someone may be able to tell me if anything I have sounds like Endo. I am being pushed from pillar to post by the hospital and am getting desperate. Here goes the life story!

October 2012 saw me have some serious abdo pain. Suspected burst ovarian cysts. Ultrasound showed fluid in pelvis. Referred to gynae with ongoing left side abdo pain which was getting progressively worse. Gynae suspected endo so did a laproscopy. Found and removed adhesions which had pulled my bowel out of alignment. Sent home with no follow up and no pain. Was fitted with Mirena during the lap but I had it removed as I was spotting everyday and it was not something I could live with. Went back onto Dianette.

November 2014 saw me have 2 major episodes of abdominal pain requiring attendance at A&E. Pain has been left sided every day since then. GP referred me to colo-rectal and urology as they seemed the most likely causes of stomach pains. CT scan showed urologist I have a cyst in right kidney and a small stone in left which should not be causing pain. Colo-rectal sent me for a Barium Enema (most unpleasant and painful) which has been done but I am waiting for the results of this. Colo-rectal made me feel really small, almost like he thought I was making things up; I am taking my husband with me next time as back-up.

Last week I had two horrific episodes of abdo pain which sent me to A&E, really intense pain for hours with sweats and a fever. One Dr I saw went through my symptoms and said it sounds like endo so I should be referred to gynae. This was also related to the fact that a Buscopan jab didn't really lift the pain by much which she thought was symptomatic of endo. She was especially surprised that I had adhesions with no endo. My GP had a sulk but has done this for me, I have an appointment at the end of April.

My pain is left side always level with and just above my navel. It is worse when I have my pill free week. The pain is always a nagging feeling but I get sharper stabbing pains which come with no warning and last minutes or hours. The regular daily pain as gotten worse with each episode and is quite wearing. I am currently taking Tramadol 100mg up to 3 times per day, Buscopan 2x daily with the option of adding paracetomol if I need to. I know I may have adhesions again or it may be a bowel issue but the A&E consultant seemed really to latch on to endo - in all honesty she has been the only person to listen and ask questions based on what I was telling her so I feel she would have the best ideas.

I have lost over a stone in less than a year with 5 pounds coming off in the last week. Because of pain I have little or no appetite. I cook food but then can't eat much more than a few mouthfuls.

I'm in my late 30s. Have a daughter at uni - result of my only pregnancy.

To all of you ladies out there does any of this sound familiar?

4 Replies

  • I have suffered period pains more or less since they started I am now 30! I only get my period for 2 days 2 and a half at the most. I have always suffered pelvic pains and irritations, heavy feelings like I have an infection etc etc. As I am struggling to conceive my doctor thought I gynecology appointment necessary where she said sounds like endo! I was offered a laparascopy where they found endo behind my left ovary. Tubes are all clear though and no scarring etc which should affect fertility. (relief) however they gave me a prescription for an injection called decapeptyl 11.5mg which lasts 3months and I have had a horrendous time on it. I have since found out I should not have been gven the jag to ease endo pain as my endo isn't really that severe neither is the pain! Also I have suffered depression before and as this medication is so strong (it treats hormonal cancers also!) I should not have been given it as it can make you depressed. You name the side effects I have them ALL! I still haven't received much information about my endometriosis and only found out about the side effects from the injection as I was going off my head, by joining this forum and doing my own research. This injection is horrendous and I suffer anxiety attacks mostly every day because of this which has severely effected my life, my family's and my boyfriends. My endo pain effects my left side too but I can control it with metafemine tablets and ibroprufen - no need for me to have gotten this injection but was not advised properly by my gyny.

    I hope you get answers very soon but any medication you are offered please research your options first and the medication I was not given this chance and just thought I had to take this medication as we trust the professionals!!!

  • Thanks. I do try to check out what I am prescribed before I take it. Colo-rectal gave me a prescription for a medication and when I asked the pharmacist about it they said it was to speed up transit through my digestive system and could cause diarrhoea. I didn't cash the script in and went home and all the info I found was that it was little better than a placebo in clinical trials. Last thing I need is something that doesn't work on pain but gives me the runs!

    Sorry to hear about your rough time. I think it's hard on the others in our lives when they see us suffering and can't do anything.

  • It defo is rough! My partner cradles me to sleep most nights it's horrendous. Most of what I remember is a blur as I ws out of it on morphine and to be honest I think I was more interested in her telling me that I was able to have children! I remember the gyny being in a rush and it wasn't her I spoke to on my follow up appointment! I received very good advice from a user on here called lindle, you should read her posts she is very educated on endometriosis and may be able to help answer some of your questions. She is not a GP but knows a lot and her posts have helped me. After her replying to one of my posts last week this is how I found out about my injection and looked up the side effects. It's beyond belief to me that it's in my system

  • Can I bump this in case anyone sees it who has ideas?!


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