Can anyone relate? A tough Endo year

Hi

I've had a rotten endo year this year.  I am just 40 and I was diagnosed 19 years ago with stage 4 endo. Last year I was pregnant for the first time naturally, but I found out on Boxing Day that I had a missed miscarriage at 9.5 weeks.  My fallopian tube also wrapped around my bowel so I ended up in emergency surgery and my tube was removed.  I have recovered well and haven't been on any medication until this week when I had my first Decapeptyl injection.  I am working really hard to stay on top of the "ugly thoughts" and make sure I am looking at the positives.  But, today, this just all feels totally "INSERT SWEAR WORD OF YOUR CHOICE".  My body has been in so much pain this year, recovering and dealing and the last three days have been hideous.  I wake up at 5 from the pain, I get in a hot bath, take pain killers, do yoga, breathing exercises, and talk to my endlessly patient mum and other half.  Usually I can keep my perspective, but today, its just too bad.  I know I would love a baby, and I also know it is getting increasingly unlikely.  Consultant mentioned hysterectomy this week and I felt just devastated.  I know I can have a happy life with or without children, but right now this all has to go in to the too difficult bucket.  I don't know if my body can go through anymore, and the thought of even being pregnant after all of my surgery terrifies me too.  Surely that is more pain guaranteed? Any words you can share of encouragement or similar experiences would be so gratefully received today.  Thank you ladies. xx

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  • Hi I'm so sorry for what you've been through, I know how hard it is . I'm 42 and was diagnosed with severe endo and adenomyosis last year after trying for a baby for 4 years. Was told the chances of conceiving were so small due to both ovaries being badly damaged and tubes blocked. Had hysterectomy, BSO and excision 2 months ago. So I know how devastating it can be, but it must be harder to have conceived and then miscarried. My heart goes out to you. Just want you to know that you're not alone, if you to talk I'm here. 

  • Hi Jean

    Thank you so much for sharing your story. Gosh. There really aren't any words that convey this stuff. Devastated is a strong start. How are you now after your hysterectomy? I am processing the likely prospect of not having kids. I still have my melt down moments. I've learned to contain them to the shower and bath. In those moments I forget how many women are dealing with this stuff. My sister in law had a baby two weeks after my miscarriage which I'm finding really hard. Happy families taking place and I can't join in. 

  • Hi, I was doing ok physicality until a week ago. I've started get a lot of pain with bladder and sharp stabbing pains in vagina. Managed to bring forward my follow up to next week. Emotionally I feel a complete wreck at the moment. Like you I try to let it out when I'm on my own as I know my husband will only worry even more than he already is. I'm hope that once I start on hrt things might improve as the hot flushes have got so bad , I'm not sleeping , so exhausted all the time which doesn't help.  

     I must admit there are days when I wish it would all just stop, so I come on this site and try and help someone else, which in turn helps me remember that I'm not alone . 

    I'm always here if you need anything, you can pm me if prefer. Take care .

  • What a fantastic approach you are taking by coming here and helping others at a time when you are going through so much yourself.  You remind me that we are absolutely not alone.  There are thousands of us and as I read the posts here there are more and more women being diagnosed each day.  I'll send you a note. 

  • Not really I just can't stand the thought of someone else going through this and feel like they're alone.

  • Hi - are you being treated in general gynaecology or in a specialist BSGE endo centre? A hysterectomy would only be recommended for endo if all attempts to fully excise your endo have failed to relieve symptoms. What is your surgical history and where in the UK are you? 

  • Hi Lindle

    I have an Endo Specialist, I am based in West London.  

    I had my left ovary removed in 1997.  Over the years I have had about 3 laparoscopies and laser surgery.  At Christmas 2015 I had EPRC and keyhole surgery to remove my left fallopian tube.  I also had my appendix removed in 1997 when they thought the endo was appendicitis.

    In terms of treatment I have had 2 Mirena coils, before that I was on Provera for a number of years.  I have had one Decapeptyl injection in 2014 and one this week to give me a break - although it isn't feeling at all like a break at the moment.  

    I am due to have an ultrasound scan in the next 6 weeks to try and see where the endo sites are.  Then we are having a review meeting.

  • Hi - being in a BSGE centre is a start but I would be wary if hysterectomy is being recommended over excision. Have a look at my posts on the treatment pathway and on how to find a specialist centre if you feel at any time you need a second opinion. x 

  • Thank you. I will have a look. Thank you for your help. 

  • Sadly I can relate. I had a very bad year last. I'm 40, diagnosed with endo about 20 years ago, had hormonal treatments, 4 unsuccessful ablation surgeries & told my last option was a hysterectomy at the age of 34. I declined as hysterectomy does not cure endo as it doesn't remove the disease just organs that may/may not be effected. I managed my symptoms well through diet & exercise & herbal medicines after a colleague recommended a Naturopath whilst living in Australia. This worked well until 2014 when things got bad again. I didn't know it at the time but I had also developed Adenomyosis & fibroids. This time determined to make sure surgery was effective I spent a lot of time researching endo & discovered that ablation surgery is ineffective, especially for anything more than mild, superficial endo. Thorough excision surgery whereby they actually cut out the disease gives people upto 80% chance of the disease not reoccuring. Furthermore excision surgery with a skilled endo specialist & not just a general gynaecologist means that in most cases organs are preserved & the disease is cut out instead. I found a BSGE accredited endo specialist & underwent a diagnosistic lap in Jan 2015 so he could see the extent of my disease  where he found fairly extensive endo on my peritoneal lining, bladder, ureters, pouch of Douglas  & endometriomas on both ovaries. I was booked in for surgery in March 2015. Prior to surgery I had daily symptoms that were not just linked to my cycle which included nausea, headaches, sciatic pain down the backs of both legs making it difficult to wal & frequent urination (every 30mins when active & every 2hrs when still/sleeping meaning I didn't get much sleep). I also had erratic & very heavy periods with flooding meaning I couldn't venture out of the house at times. To make matters worse 1 week before my scheduled surgery an endometrioma ruptured resulting in my ovary being stuck to my bowels. It was excruciatingly painful & I couldn't move off the floor for 3 hours. My surgery lasted almost 7 hours & included what is called a total hysterectomy (ie uterus & cervix removed) but this was for Adenomyosis not endo as hysterectomy for adeno is a cure since adeno affects the muscles of the uterus walls where endo does not. My surgeon was adamant (& skilled enough) to retain my ovaries despite the endometriomas on them as oestrogen has important health implications (early menopause be it natural or surgically induced increases the likelihood of cardiovascular disease, early dementia etc). I cried on my way to theatre as the hysterectomy was just so final but I knew it was the right decision for me. Had I not had adeno I would not have agreed to a hysterectomy but then my surgeon definitely wouldn't have suggested it for endo. I also had a temporary ovarian suspension to reduce the risk of adhesions but unfortunately my ovaries were too sensitive with this & the suspensions had to be released after just 4 days due to extreme pain which couldn't be controlled by morphine & nausea. After they were released I felt much better. Recovery was a little slow for me as unfortunately I developed a post op infection plus my bowels were very sluggish after surgery. By July 2015 I was finally starting to reap the benefits of my surgery only to fall down 2 little steps & fracture my foot badly. I was in a cast for 8 weeks & back on oramorph as the pain never subsided. 2 different consultants to the one I saw originally said it should have been operated on & the original consultant who forgot he was he first to see me later said he was surprised it wasn't operated on & pinned!  Xrays & scans showed that my fracture had not healed at all in the first 6 weeks my foot was in cast which was why the pain was still there. They discovered I had Osteopenia & my Vit D & calcium was very low. I now wonder if osteopenia is due to Zoladex I had due to endo - just another side effect these horrid & ineffective drugs can have but I was never told at the time. My foot finally started to heal but I was left with a limp (& still do limp sometimes) so I was in physio for quite some time. I decided to pay for hydrotherapy sessions with a physio as I was desperate to be walking properly again, especially as I have a very energetic dog & was missing out on the walks with him & my hubby. However I then developed a chronic ear infection - my ear swelled up & closed up. My GP took 1 look & called the ENT Dept & booked me in to be seen within the hour it was so bad! More excruciating pain & back on antibiotics & oramorph which merely dampened down the pain a bit. Finally got over that to get a cold followed immediately by the flu (& I mean real flu!). Last year was really just a write off. I spent most of it confined to the home & in pain. I suffered my first ever panic attack last year at the age of 40 & I think it was because my body & mind had just been through so much. This year things have definitely improved (so far touch wood)! So yes I know what it's like to feel like the world is closing in on you. But there is hope. Find an endo specialist who is experienced in excision surgery as they are more likely to be able to preserve organs & thoroughly remove the disease. If you're in the UK a good place to start is the BSGE accredited endo centre list (www.bsge.org.uk). Unfortunately not all centres are equal with some being better than others so it pays to do your research & ask around. Whilst you're not allowed to discuss individual centres or surgeons on this forum you can on a facebook forum called "Endometropolis" which is a support group specifically set up to answer medically based queries & provide educational support regarding endo. It also has a world map of some of the best /recommended endo surgeons. Also if you haven't done so already check out this website, endopaedia.info, which is a reputable, research driven educational resource for people interested in learning more about endo & treatment options. I hope this helps & I wish you all the best

  • I don't know what to say.  What a year you had / survived.  Thank you for taking the time to tell me about your experience.    And thank you for the links, I am going take a look now. 

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