Endometrioisis has killed me

Since 7 years i m with killing abdominal pain . Visited 8 gyne dr . All were sure if i will get married this pain will go away . I have two phase of pain . One before periods nd after periods. I got severe pain fits for 30 minutes duration 5 to 6 times in a single day . Not living normal life. Coz of it i have cut down my social circles and activities. M 34 years old now still unmarried but 5 month same like before family took me to emergency treatment in pain as its before perids pain ( after periods is controlled somehow with OCP) there dr told that i m with endometriosis. Then i rushed to my old dr with whom i was since 2012 due to this pain . She had ultrasound again and said yes its endo nd treatment is same over which i am already . Ocp . But as pain is not getting peace so she suggested to stop periods. I dye with pain these oCP does not work on before pain phase but yes do effecting my ovulation pain via not letting them happen. I want operation . Just want to get rid of pain but this new dr nd old one both are not agree on operation . Old one suggested me stop periods for a year to have peacefull life and this new is giving me ocps pain killers which are not effective by any means . I just want to die . I can not tolerate this pain . My life is not normsl. I can not eat due to pain , i feel hungry but canot eat due to pain nd vomiting. Though since 7 years m managing this pain coz m not having death msg from God. But my all patience has been givn up . I do not u dersand how to mitigate this pain . I just want to pull out every thing from my belly coz i want relief. Nothing works on this pain . Any suggestion for controlling pain ? I do not know what is enfo but i know pain from which i want to escape. All the time dr says go get married but if god has not created someone for me then what can i do for ? All i want to control my pain . No matter if i remain single for my rest of life . To me health is important coz i will be able to live , charish my hapiiness. With this health who will prefer to get married ? Plz save me from this pain or god give me death . I wounder isnt any pain killer which can has any significance impact on endo pain ? Has not science has modern that much ?. Regards a heartbroken pakisni girl.

18 Replies

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  • Hi i am so sorry to read that you are struggling in this way. Do you live in Pakistan or the UK? If in the UK I would advise seeking a specialist however im sorry i dont know anything about healthcare in Pakistan...I am not surprised you are not finding relief with OCP. Can you keep a pain diary so you have something in writing to help explain you need stronger painrelief? Do you use a heat pad or hot water bottle? I often find this comforts me more than anything else ive ever tried?

    You are right the only way to truly diagnose Endo is via laparoscopy. I will put some links on for you to have a look at for info on diet etc.

    Are you on facebook?

    Poorni1234 i hope you dont mind me tagging you and hope you are doing as well as can be? Is your healthcare similar to this lady's? Can you advise her at all?

  • Hi brizlebird, thank you for writing me . You will not believe even at the moment i am in pain , usually when periods start this pain goes away but today its not going . I have tried brufen, voltral, diagesic, decloran and few more as pain killer but nothings works . I hv electric heating pad too but nothing work seriouslly. I beg for pain releif . Yes i live in pakistan i am with this pain dince 7 years but 5 months ago i came to know its enfo when family took my in a local hospital for emergency treatment as i yell with pain nd vomit alot . Though i visited most expensive nd experienced gynae dr in past but a local dr said its endo after having ultra sound . Then my main dr had ultra sound when i told her all these she said yes endo . Though she was with me since 2012. Now i hv left her as she says either operation ( if you do not want to get marry ever ) or menopause is the solution . I had been on menupause state for a year in past with another Dr but no gain . As that meno pause Dr was suspecting endo too. But i become much fatty with lots of freckles so i stoped her prescription. I hv visited so many drs but no one was sure . But this last Dr is sure as two more ultra sound rom different dr are also indicating endo . Noone is ready for operation. If via laproscopy they just want to make sure is it endo , than it would be not fair . As since 7 years noone was expert to tell that what is it . I visited gastro drs, gaene , tuber clauses drs as i did my best to dognoded it nd to get rid of it but all in vain. I just wish to die with this pain, i try my level best but whn i am in pain i cannot think anything else apart from commiting sucide. Whn i feel better i think as it will never come back but when it comes i feel like its better to die. Due to it i hv become bit irritating personality. Get hyper in a short time . I do not like to get social . God has blessed me with every thing but has snatched my health. I want health , a normal life. May be one day with such intense pain i will not breath nd i will be more than happy somewhere else with no pain may be .

    You asked am i on facebook? Yes dear i am available there :) i want to live my life but want to die toooooooooooo

  • Tehseen have a look at these:

    endometriosis-uk.org/unders...

    endo-resolved.com

    Lindle please could you put your fb link on for this lady? Thank you x

  • Tehseen join the facebook group below.It is great for support and advice. Even if you dont post anything, it helps to read others experiences. It is a closed group, so your fb friends wont see anything you post.

  • Hi Brizzlebird, no of course I don't mind you tagging me. I am doing better than before, and I hope you are doing well too. Unfortunately I have no knowledge of the Pakistani healthcare system. I would assume it is somewhat similar to the Indian system in that it is equally incompetent and unhelpful (at least going by Tehseen's descriptions) but other than that, I don't have any idea.

    Tehseen, I am sorry I cannot give you any specific advice but first of all, let me tell you that you are not alone in this. All of us endo ladies have the exact same feelings from time to time. Also, I know the social pressure around marriage in countries like ours but honestly, its so stupid to say that getting married will cure endo. I am married for 9 years and my pain has only gotten worse. So please focus on taking care of yourself first, you can worry about other things later.

    Coming to the problem, here are my two cents: I am assuming your healthcare is also similar to Indian in that you can just walk in to a hospital and see a gynecologist and/or schedule a laparoscopy when you want. If yes, I would advice you to get one. I know it is scary to have a surgery just for diagnosis but it is the only way to know for sure what is the problem. Endometriosis cannot be diagnosed through ultrasounds, xrays etc. It is possible that your pain is being caused by things like chocolate cysts, adenomyosis etc so the only way to be sure is to have a surgery. They may also be able to drain cysts during the operation which may help. And laparoscopy is minimally invasive, you will just have 3-4 very small cuts on your stomach.

    Also, like Brizzlebird said, keep a pain diary and a food diary. For many women, removing gluten, diary, red meat, caffeine and soy from their diet helps. I know it is tough but it is worth trying.

    For painkillers, have you tried Meftal spas? It does help me a bit during periods. I have also recently started taking Ayurvedic medicine, which has helped me a lot. My periods are still hell but the pain after periods has reduced a lot and I am able to manage with painkillers (brufen and paracetamol) now. I don't know if there are Ayurvedic doctors in Pakistan, but if you have or if you can get someone in India to bring/courier it to you, I can give you more details. It is worth a try. Please message me if I can help in any way and do not give up hope. All of us are in the same boat and all we can do is to keep trying things until we find something that works.

  • Thanks poori foryour kind reply. Yes i am taking care of myself . Nd yes our cultureis somehow similar to indians. Yesterday i dpoke to my dr she had said come nd neet me on monday. Now lets see whats she suggest. Moreover dr saying for marriage coz of babies purpose so that can later on do operate whatever they want to but its in our culture its not that easy to get married as its our family who choose someone for us not we. So thats why dr are relectant to have operation coz it may harm my fertility. Nd dr said me after operation it may come back again so. We will try to cure it with medicines . Sometime they stopped my periods or sometime they give ne oral ocP. But pain is there for which i visit dr . My issue is pain not endo . If pain goes away seriouslly i willnot care about what is wrong inside . Periods are regular , normal . But pain is there. I want to getrid of this pain . Ovulation pain was also there which dr have cured through ocp. But this before periods pain is killing me.

  • Tehseen, your doctors are over-simplifying the scenario. First of all endometriosis affects fertility so there is no guarantee that you will be able to have a child immediately. Secondly, having a child is no guarantee that the pain will reduce, there are many ladies who have kids and are still suffering. Also, I think what your doctors are suggesting is a hysterectomy and not laporoscopy. I do not think a laporoscopy will harm your fertility, I have not heard that anywhere. And in any case, it is not a solution for endometriosis unless you have excision surgery. I really really don't think doctors in Pakistan are capable of doing it, I could not find a single doctor in India who specialises in excision surgery for endo. Most are general gynecologists with emphasis on fertility procedures like IVF.

    So I think what your doctors are saying is that have a child and then we will do a hysterectomy. But again, that may or may not work for pain. Many people have pain even after the surgery and also it comes with its own problems.

    Without proper investigation there is no way to know what is the best solution for you. So please press educate yourself, understand what are the options and press for answers. Don't blindly accept solutions. I am telling from my personal experience. All the best to you.

  • Yes porni your words are very much close to my dr. She says we want you to have a baby first ( after marriage ) then we can remove your this paining stuff . But she also said ppl do get pregnant with it not ppl do not get pregnant even if they are fit nd fine so i can not give u final wording that u will become a mother or not. But if. Tehseen u get problem in becoming mother or conceiving there is iVF way too which u can adopt. I myself is scarred to with leproscopy. Can u tell ur experience of leproscopy? Before arrangement? After effects? I saw on youtube they fill belly with gass , does that gass go away after operation? Does tummy will come back on its actual size as it was before operation? Does it hurts? U may found all these question silly of me but seriouslly i need to know all these things as everything matters to me.

  • To be honest, my experience was pretty easy but then everybody is different. I recovered in 3-4 days but some people take longer. The gas goes away after operation but you may have some shoulder pain in the initial few days because of it. They give you painkiller for it so it's ok. I did not notice any changes to my tummy size, it was same lol. But there are a couple of small marks on tummy where they cut it. It is fading away slowly. There are many comments on this site and on internet about how to prepare for the surgery, I just followed what made sense to me. Mine was a mainly diagnostic surgery, meaning they did not fix anything. They just did it to see why I am getting pain, whether my tubes are blocked etc. So it did not help with my endo pain but it at least confirmed that it is endo.

  • Thank you so much Poorni1234. So glad to hear you are doing better. I am doing well i am 6 weeks post excision surgery. Early signs are looking good x

  • Yaay, I am so happy to hear that you are getting better. I am gonna keep all my fingers and toes crossed for you. Hope this year is the one when you finally get rid of this horrid pain.

  • Thank you! Likewise for you too x

  • This is so sad to read but trust me I know how you feel. I am in constant pain and it's effecting my everyday life. I hope you get sorted soon.

    I'm only taking paracetamol and ibuprofen and it's not really helping.

    I'm waiting for an appointment with my consultant who I'm hoping will allow me a hysterectomy

    I feel like ripping my insides out too. You are not alone

    X

  • Hope so .

  • Dear Tehseen

    That sounds like a terrible position you're in. I'm sorry to hear that you're suffering so much and that the oral contraceptive pill isn't working for you. Have you had a laparoscopic procedure to formally diagnose endometriosis? I ask because you say above that you have had an ultrasound but the only way you can formally diagnose endo is with a laparoscopic procedure to look inside with cameras.

    I attach a fact sheet on getting a diagnosis and also a pain management fact sheet which lists different things you can do to help the pain.

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    If you need someone to talk to someone on our helpline will be happy to chat

    endometriosis-uk.org/helpline

    Louise

    Endometriosis UK

  • Yes after coming here i have got to know that to make sure it is endo laproscopy is must but i wonder how my dr isco fident that it is endo . Three dr after having ultra sound hv said that to me. If u can help me bia seeing my ultra sound report i can share that to u in privately .

  • Hi Tehseen

    We are a charity based in the UK offering information and support to young women affected by endometriosis.

    We are not medical professionals so cannot offer any medical advice.

    However, we have lots of information about endometriosis on our website which I hope you will find useful.

    I do hope you get the answers you seek.

    All the best

    Louise

    Endometriosis UK

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