Frustration and confusion

Hi, I am 21 and after 2 years of pelvic pain, pain during intercourse, mood swings and weight gain, I have been diagnosed with endometriosis following a laparoscopy last week. When I woke up after surgery, I felt relieved to hear the diagnosis so that finally, I could maybe do something to alleviate the horrid symptoms. I was told that I did not require a follow up appointment but that if I experienced anymore symptoms to go back to my GP. The surgeon spoke to me literally 5 minutes after i woke up and I can't remember much of what she said and would really like to speak to someone about where I should go from here. My partner and I have been together for 3 years and are both students at the moment but really want to have kids in a few years however the surgeon told me that my left tube is blocked and therefore I am at high risk of ectopic pregnancy, is there anything that can be done to unblock the tube? I am still in pain from my surgery but everyday I can feel more and more of the all too familiar endo ache coming back, is this normal even though they removed most of it? I am so frightened of not being able to have children and feel that I was offered very little support or guidance following my diagnosis. My daddy passed away 4 weeks ago and I am an only child and the thought of not being able to give my mum grandchildren is just heartbreaking. Any advice/info would be so greatly appreciated as I really don't know what to do next :(

9 Replies

  • Bless you. You really are having to deal with such a lot all at once.

    When a woman has a first lap in general gynaecology it is usually just the start of the road to proper treatment. It is very early days to be able to assess your symptoms as you are still healing so you will be raw. The course from now will depend on where your endo was found and what was done. By 'removed' they probably mean 'ablated' which will just burn the surface. If you were having pain with sex this can indicate endo in a deeper place that can often be missed at a first lap so if your pain continues when you should have recovered, perhaps in three months, you will need to ask for a referral to a specialist centre. They would also be able to advise whether it is possible to repair your tube. First of all though I should get a copy of the opertaive report from your GP so we can see just where you had it and what was done.x

  • I wish I could recommend something. It sounds like you're having an awful time. So sorry to hear you've recently lost your dad. It must be so difficult especially having the diagnosis so close too. I felt pretty much exactly the same as you did after my diagnosis in early 2014 after years of suffering. I didn't get much information or even be suggested any other treatments other than to continue with my contraceptive pill! I've had some many problems since- I had a few months free of pain and then it all came back with a vengeance wreaking havoc on my bladder and bowels I fear :( I'd definitely as your gp to refer you back to your consultant/gynecologist to talk about treatment options. I'm only just doing this myself after been sent for pointless ultrasounds I've been referred back to my surgeon for another consultation!

    Just know that you're not alone and if you ever want to speak to someone feel free to send me a message. I've also recently started a personal blog about living with endometriosis and Polycystic ovaries and am generally just trying to spread awareness and be there for other lovely ladies who go through the same thing. As for being post op- give your body time to heal- it took me atleast 2 months before I started to feel significantly better and have a reduction in pelvic pain.

    Sending lots of love and support and hope you feel much better. Remember you're a strong lass :)

    If you feel like nosing at my blog- I've got a full post on my story with endo and being diagnosed and such.



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  • ahhhh! thankyou so much!!!! that is so sweet and I'm so glad that you like it!!! I'll be posting lots more as i have so much work that I didnt have time to post!!!

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    Sending lots of love and hoping you're having a pain free day!



  • I had my lap 6 weeks ago and still get odd twinges now and then, I worry it's the endo coming back, however I'm also on the zoladex injections. I would go back to the doctors and seek further support. There are plenty of support too online for endo which I have found. I was also told chances of getting pregnant would be nil due to the damage on my ovaries that I was also in fact lucky I had my daughter at 19. its made me certain everything happens for a reason. My consultant did say there would be help out there when and if I wanted to have children in the future.

    Try think positive.. Which I know is hard, feel free to message me.

    Condolences about your dad too sweet xx

  • Hello lovely,

    I too was diagnosed at 21 following the exact same symptoms as you. You definateky now need to go back to your gp for them to make sure you are seen by a specialist in endo. Make sure you are aware of all your options and as said in another reply- these forums give so much support as long as you remember that with endo things may work for one and not another so don't feel disheartened by things you read that may not have worked for another as it may very well work for you.

    I can imagine the loss of you dad and thinking about the future is making you very upset but please try to stay positive. It may be that if you are in a long term relationship and you do both want a family together you start earlier than planned eventually, but don't feel pushed either.

    Take care and big hugs xxxx

  • I am so sorry to hear about everything you're going through. It's definitely a lot!

    Regarding the endo, I know exactly what you're going through. I was diagnosed in May 2014 with endo after years of pointless blood tests, CT scans, ultrasounds, etc with no explanation for the pain. I've had 2 laps since my diagnosis and I'm scheduled for a 3rd in the (hopefully very near) near future. The gynaecologist keeps telling me that there's nothing really he can do for me other than more laps (which is getting exhausting to be quite frank).

    I was on a progesterone contraceptive after my 1st lap and that seem to help a lot (I think the surgery had a lot to do with it too though) but when I went off it in December when my husband and I decided to try for a baby, I was very quickly reminded that the pill was not a cure, but simply a symptom suppressant (if you will😋). I went back my gyn and practically begged for a 2nd lap. After this one he told my husband and i to keep trying to conceive and that he had high hopes due to my age (23). However, it's now the beginning of July and I barely had any pain relief from the last lap (and still not pregnant after trying 7mo) so we decided to take a break from trying and go back on the pill for a while and give myself a much needed break.

    As far as pain management, I still take the strong stuff the doctors prescribe, but I also found that taking fish oil and folic acid on a regular basis, eating a lot of foods rich in omega-3's (eggs, avocados, fish, almonds, etc) and staying away from dairy seem to make a difference. And exercise! (I completely understand that this is WAY easier said than done though).

    Also, endometriosis is fed by the hormone estrogen, which is found naturally in the body, but a synthetic form (as well as others) are used when raising livestock (especially beef). So if you can, try to avoid eating a lot meats, unless you know how it's been raised.

    I know a lot of this stuff sounds extreme and like a lot to take in, but it does help!! And even a little relief without pumping our bodies full of chemical after chemical is a bictory!

    Hang in there! You'll get through this!!

  • Hey there,

    So sorry to hear you're going through such a lot, condolences on your Dad passing xx

    Firstly I would say please don't worry about babies right now - I was diagnosed at 24, totally shocked and had a bit of a melt down feeling totally overwhelmed about 'baby stuff'.

    Be kind to yourself and concentrate on YOU.

    After surgery you will be sore in the endo area because that's where they've operated - it will take time for you to heal up 6-8 wks, but longer until you feel totally like yourself, even the anaesthetic takes a lot of time to go out of your system. Take it easy on yourself and try not to panic. Everyone's endo is different and reading about ladies with more severe disease can be frightening.- avoid worrying about that.

    My best advice right now is get home and relax, sit in comfy clothes, watch your fave shows, have your friends over for chats, hug everyone ie. Do everything you can to feel calm and destress as this will aid a good recovery and help you to get the most out of the surgery. In a few months time you'll be able to assess how much the surgery has helped and if symptoms persist get your gp to refer you to an endometriosis specialist. Here is a list of specialist centres

    Also two websites that have helped me manage my symptoms and understand more about the disease

    You'll probably know the first one :-) endo resolved has info on the endo diet.

    I've cut out red meat, most dairy and plan to cut back majorly on wheat, also drinking a lot of peppermint and other herbal teas has really helped me which is really easy to do!

    I can't emphasise enough you're 21 and going through so much at the moment. It's important to take time to grieve and recover properly right now before trying to plan your future or how to manage endo stuff. You and your partner obviously love each other very much and are studying for a better future for yourselves and prospectively any family you have. I know hearing that endo could affect your chance of a family is scary - it almost tore my relationship apart as I got so upset - now happily married! The whole experience of endo has made us stronger. Enjoy your studies and get qualified it's something you wanted for yourself before endo happened so don't let it take it away from you X

    Your consultant should have written a letter to your gp detailing what was found in the op/diagnosis etc. - You can ask for this at your gp practice once you're feeling better. I think you should also have access to you med notes at hospital for more info.

    Look for what stage of endo was found and where. If you have one tube affected - be positive - your ovaries and womb could be fine and you have one unblocked tube! Plus the endo has been tidied up which aids pregnancy :-)

    My husbands cousin had both tubes blocked and now has a beautiful little boy! There is plenty of treatment available if you need it in future to help you conceive.

    Please don't be frightened. There are plenty of people around here who understand exactly how you feel and can offer support.

    Be good to yourself and feel better soon


  • My best friend suffered endometriosis her whole life. Like you she thought she'd never get children. At age 39 she has twin girls and a 3 year-old boy. She said that at first she tried ivf cuz it was cheap when she lived abroad but it didn't work. Of course, eventually it will work, as long as you have your uterus you will carry a child. But then she told me that there was certain times of themonth or maybe right after surgery to rremove the buildup of scar tissue that they tried and boom it happened! So don't worry about it. Your way to young to worry. They also have hormone medication therapy you can take for endo. Millions of women have it, some don't even realize it. And majority of these women all have children.When you decide to have children,it will happen! Take care of yourself first! Like I said my friend had her children in her 30's and her insides were practically meshed together from horrible endo. She finally at 39 after her last child underwent a hysterectomy and she says its been wonderful! She suffered so many years! But you have many years to have children so stop worrying. Live in the moment. God has a plan for you...

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