Surgery sadness


I am 24 years old had endo for 10 years. I am recently engaged and planning my wedding for june next year. I am also a student nurse in my final year. However, in the last 5 weeks a collection in my right tube has caused me pain, they treated me with antibiotics with no success. They told me yesterday they want to remove my right tube and possibly the right if it is damaged as well. I feel so isolated as I don't know anyone who has gone through this kind of thing, my fiance is so supportive and wishes it was him in pain instead of me. I have no children and i know endo can cause infertiliy but if I don't have any tubes I know it won't help me to have children as ivf is the way forward. I need someone to say they understand how I feel, because they have endo 2.

14 Replies

  • You poor thing I totally understand. I started my first round of drugs at your age. Sounds like you have a good support network which in invaluable. I hope you have a wonderful wedding xxx

  • Hi there,

    Sorry to hear your sad news it must be really difficult to hear you could face loosing both your tubes & it's hard when you try talking to your friends but no one understands endo & thin all it does it cause heavy periods! People have no idea how isolating & depressing it can be I'm 25 diagnosed at 24 they also reckon I have had it for a long time undiagnosed I luckily managed to have my daughter who is now 2. I would say it really helps if you have a good consultant and don't do anything you don't want to I refused to have any tubes removed even though they told me I could need it as I was adamant I was to young and wanted a child they said it was a waste of time as I would never fall pregnant but after 2 years of trying I did! It's hard if your in a lot of pain and bo one else knows how you feel but you but I simpathise how depressing it is at such a young age.

    Wish you all the best of luck & don't give up x

  • Hey :) my name's Hollie I'm 24 too. Reading your post made me so sad so I had to write back to you. I have endo and adeno. I understand how you feel!

    I haven't had any tubes removed but have had to have the babies talk with the doctor and my mister because of the adeno. At first I was really really sad about it. Like felt like my whole purpose of being here was void. But my misters been so lovely, were hoping to wait 2 years if possible before we try for a baby. But he's helped me to chill out about it for now, he says we'll cross that bridge when we come to it. And if we can't have a baby or I can't carry one there are so many children in the world who need to be loved.

    I found it useful to research as much as I could then I went to the doctors and just asked them all the questions and worries I had which helped too

    I still get sad about it, I come from a really big family so think there's almost an expectation from them to have one too but, as he said, we'll cross that bridge when we come to it.

    Always here if you need a chat,

    Hollie x

  • Ikc1990 ,I know exactly how you feel...there would be sad days like these but also high times especially as you are lucky to have some who is so loving and supportive.If you have to take both tubes out do just that as infections can be fatal.Be strong xxx.

  • Thank you i am just happy i am not alone xx

  • Hi there, so sorry to hear you're going through all this. I was diagnosed at 25 so I know it can be devastating when endo gets in the way of your plans. I haven't had tubes removed but had numerous surgeries. I think having the op if there's infection there is the best option, ivf can be so daunting but you're really young so the chance of success is good!

    Find out when they're likely to do the surgery and work uni/wedding around that. If you need to postpone exams/assessments the world will wait - you're totally entitled to support with this from uni so ask for it. With the wedding ask for help from friends/family to get things sorted. Most importantly enjoy all the fun of being engaged and planning your big day. You have wonderful things going on for you right now - soon to be a nurse and a wife! So don't let endo take the joy of that away from you. If you need the surgery get it done so you can feel better get through your finals and enjoy your wedding! Everything will fall into place, you aren't on your own and there are lots of us who know exactly how you feel.

    Sending you a big hug xx

  • I had endo at 25. I was in so much pain I asked the doc to give me a hysterectomy at 30. If

    That wasn't one of the hardest things I did, I don't know what is. I decided to keep one ovary so I wouldn't go into menopause although doc said eventually it wld also have to be removed. But its been forever and still have my one ovary. I'm glad I had the hysterectomy but i was depressed.for a whie and I went through it all alone. Get another opinion if u feel its necessary so u know u have exhausted all options. Im also going into nursing at a.much older age.than u. Not sure i would have made it through if I had kids but wasnt in love at the time i made my decision. Now I'm meeting all kinds of guys that already have kids and I can b the mom i always wanted to b. Life changes when u get older. Most women will not remain married to the forever. I'm experienced. Life isn't the fantasy most girl's want it to b. Many end up divorced raising kids on their own. I beleive sometimes God has a way of protecting us all. Sometimes even through pain.I wouldn't b going to nursing school if I had a child and had gotten married when i was younger.Must b god's plan for me.I'm sure he has one for you .

  • Thank you everyone. Last night i was crying but all your messages have helped so much. So glad i found this forum thuank you xxx

  • Hi, I can hear in your letter how devistated you are. Please, please, please carefully consider having both your tubes removed. I met my partner late, and had never been trying for a child before I met him. When I went for tests as I was getting pain I was told that one of my tubes was blocked due to Endo, and they couldn't see the other one on the scan. They recommended I have both my tubes removed, as they said the fluid build up in the tubes could kill an embryo or I could have an ectopic pregnancy. They said they would not start IVF without removing them and I was seriously running out of time. WIth them giving me hope on IVF working I took their advice and had both tubes removed - without even 'seriously trying for a child' with my partner. I have so many regrets. Our IVF failed, and the clinic were very dismissive and said our chances were now even lower as the first attempt had failed. Every time I go for accupuncture at different clinics (expensive at £150 a time) I hear "Oh, if only you had your tubes, we may have been unable to block them". I'm just waiting for another round of IVF, more expense and hoping. Please look into accupuncture for your tubes etc, before you make such an important decision. I'm not saying it works, as I've only started accupuncture this time round for my second IVF. If I could wind back time I would and keep my tubes. You are so young, and I want you to think about this with a clear head and consider all the options. When they are gone, you only have one other route available and you're constantly relying on drugs, labs etc. My heart goes out to you. You are still young and I'm wishing you all the best. Take care. x

  • Hi my tubes have been blocked since my first lap at 15 years old. Endo never really affected me because my medication works well with hormones and other meds. Ive asked to try and save the left side but the right has to be removed. I am worried about the possibility of having both removed xx

  • I really feel for you. Nobody should have to go though that at such an early age. I personally think you are doing the right thing by trying to save one side. I know you are worried about losing both. Do your best to try and keep one, at least you'll have some hope when/ if you are not waiting for IFV. I just feel like we're waiting to book apts and fit in around our clinic. Financially it's a real struggle and emotionally... as you know, it's a roller coaster. I wish I hadn't agreed to both, but for me it's too late and now I feel the clinic is in control, and I just have to follow instructions, pay and do whatever they tell me. I have no choice. I shouldn't complain. People have gone through worse. I'm wishing you all the very best in the world. I do hope things work out for you. If you have 1 tube you have hope - only my personal view. You are still young, so fingers crossed IVF or ICSI would work for you. Sending a virtual hug. Best wishes. x

  • Can you freeze your eggs? X

  • Hi - I know fertility is such a big thing but perhaps we should consider the bigger picture regarding your endo as a whole. You don't say if you have it elsewhere or what treatment/surgeries have been done. I imagine that so far you have been seen by general obstetricians who deal with endo in a general sense in so far as it affects fertility. Click on my name and read my post on how to find an endo specialist centre who would deal with your endo and try to preserve your reproductive organs as a priority as you are so young. I do recommend you ask your GP for a referral. x

  • I understand !! I'm 44, I was a kid when this all started. Don't give up it does get better, even after surgery which I've had a few times now. But I had other issues. Look at Lyndle's bloges regarding Endo there's a lot of information and which Doctors to look up.

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