Hi I'm Cat I'm 29 & I'm new to the site!! Think it's an amazing site & very supportive!! I was diagnosed with endo just last year after a laparoscopy!! I had an ongoing problem with lower left sided abdo pain it wasn't really cyclical sometimes I would have it constantly for 2-3 months!!! My GP in London was disgraceful & originally being from Ireland I went home & paid privately for a consultation with a gynaecologist who thought endo was the likely cause of my pain!!! I then had a laparoscopy & treatment for endo!! Since then it's been a long & horrendous journey!! Was supposed to start prostap injections but my GP in London wouldn't prescribe them & put me on the pill microgynon which didn' work!! Even though I had confirmed endo she wouldn't even refer me to gynaecology in London!! In the end up I ended up in A&E at the hospital I work in with severe abdo pain & a UTI & managed to get them to refer me to gynae as I was in so much distress about the situation!! I've since changed GP & my current GP is amazingly supportive!! I've been on cerazette for 6 months which hasn't eased my symptoms at all & I am now trying the mirena coil!! It's only been 3 weeks with the coil but I think I'm going to get removed as I already can't find the strings & the pain is worse on the coil than it's ever been!!! I too find its ruining my relationships & wrecking my career!! Ive just started in ICU & want to specialise but I'm struggling with being on my feet all day with increased pain & lower back pain!!! & the fatigue is horrendous I take terrible afternoon slumps I'm currently on antidepressants & have gained so much weight I'm struggling to get it off because I'm so exhausted I struggle to exercise & sometimes in too much pain to exercise!!! Some days I can't even manage to take the dog out for a walk!!! I feel like I've been living in hell for the past few years!! I'm now at a crossroad as to whether to take a career break & move home & try to get myself sorted as best I can or just keep struggling on!!! Either way I've spent too long in this dark tunnel & I have just decided I am going fight this as best I can endo has taken over my life for too long & I want it back!!!!!!

6 Replies

  • Hi darling it's a alful thing to deal with, and I sympathise with you, ive just been diagnosed with endo and adenomyosis, my surgeon excised endo from behind uterus and ligament, only 3 weeks ago, but I havnt found any relief unfortunately, but he thinks it's the adeno that's causing my pain, got follow up Teusday and I think his going to duggest a hysterectomy, ( the only cure for adeno) I have children so I will go with it.

    If you look up a lady called Lindle, she has posted some very informative stuff, but the one I yhink you should look at is how to find a specialist,

    When you said treatment for endo, did he use laser or excision, only laser isn't a very good procedure and only shaves disease of from surface, where as excision cuts deep below in order to get all endo, so therefore dosnt grow back, obveriously it's not a cure but that bit that you had wont grow back and new endo will take longer, therefore freeing you of symtoms for longer,

    Good luck xxx

  • Hi - I'm so sorry you are struggling so badly. Your description is so vivid that it takes me right back to how I was struggling when stuck on my 'journey'. But you have decided to fight and that is what you must do as the means are out there to get properly treated. You also have a supportive GP, which is a huge bonus, but he/she might not be very informed on endo and you now need to share the learning process together to move forward.

    You will almost certainly have had your lap by a general obstetrician who has not been thorough and only used superficial ablation/laser techniques rather than removal by excision and has probably not searched the areas of your pelvis responsible for your pain. Where did they say you had endo and what was done? Do you have the surgical report? - your GP can show it to you if not. Have you been investigated for adenomyosis?

    You have pain all the time which makes activity and standing almost impossible and I suspect you will have a constant feeling of your insides bearing down pulling on nerves. It sounds likely that you probably have endo on the ligaments supporting your uterus which really can cause excruciating pain when you stand or move because of the weight of your uterus. Something that can sometimes ease this is to wear something to try and hold your insides together to stop them from bouncing around like one of those pregnancy bands. You have tried all sorts of medication which has had no effect but hormone manipulation can only help pain being caused by hormone activity, which will usually be cyclic when monthly inflammation kicks in. It will do nothing for pain from constant nerve aggravation or adhesions or for stages beyond mild to minimal. Console yourself that prostap is unlikely to have helped either and you have saved yourself 6 months of what could have been awful other symptoms as well.

    First have a look at my post on endo and its many symptoms to see what you identify with, which I think will be a lot. Then the one on how to find a specialist and your rights to a second opinion and to see one of your choice. x

  • Hi Cat,

    I'm Mary, 27. Also diagnosed and have had oophorectomy in 2013 for endometriosis even after GNRH treatment. First, I have felt your pain especially through the months leading to my surgery. Secondly, I somehow understand what it's like to feel how a supposedly non-life-threatening condition could take away one's life (or quality thereof). I just learned that my endo returned so my OB-GYNs have given me male hormones and then starting today, Qlaira. What I wish I should have done differently is I should have really made the most of the two years before my endometriosis returned. Before the recent diagnosis of its recurrence, I was blessed enough to have experienced the quality of life I've had before all these started.

    I have no clue what lies ahead for me. What I know is that we ladies should stick out and pray for each other and we should keep clawing and fighting our way out of this.

  • Thanks it's great to get advice from you all who have & are still battling with endo!! I had a small old powder burn of end on my left ovary & an active spot!! I also had filmy adhesions on my bowel!! They used the laser to treat these areas!!! It's bizarre as I only have endo on my left side!! I was never treated or have never been told about adenomyosis!! Thank u all for ur information & kind words!!

  • Defo look for a specialist in endo, it's so sad that so many ladies are still receiving the laser treatment,

    Good luck and keep us posted


  • Hi everyone, I'm a newbie too and so relieved to have found this site. I was diagnosed with Endo in 2004 after a lap. I have received no help whatsoever from GPs/Gynea and just take each day as it comes. Mine is on the right side, ovary, lesions and ligaments so in lots of pain daily and I just fight through it. My female GP told me that Endo shouldn't cause pain :00 - shame on her! xx

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