Scared Mom, Full of Endometriosis and Cysts – Tina’s Story

I’m sitting in front of my kid’s school crying in my van – something I’ve done a lot this week. I spent my teen years and 20s dealing with painful heavy periods that were anything but regular. 28 day cycle…what’s that? They put me on the pill young to try to control the bleeding and the pain.

I married at 25 – wanting to be a mom all my life. We started trying to conceive on our honeymoon. Five years later after many many tears and negative pregnancy tests we discussed IVF. After finding out that my husband and I both seem to have issues we decided we couldn’t handle more heart break and decided to start the adoption process. We have since adopted two amazing children that I love more than I ever thought possible.

In 2006 I had to have my gall bladder removed after bring sick for over a year. Then in 2008 an balloon ablation to try to control my excessive pain and bleeding. Then a year or two later another ablation – this time a rollerball ablation.

In December 2011 I started having excruciating back and side pain. After escarole trips to emergency where they did nothing but give me morphine, I finally got an ultrasound which found a massive cyst on my left ovary.

A thirty minute surgery was scheduled to remove my ovary and my tubes. Three hours later I woke up violently vomiting up find out the surgery was not successful. They got in there and found out I had endometriosis everywhere – attached to my bowels, bladder, ovaries, uterus.

The doctor said it was so bad she called a fellow obgyn in with her to look at it and they looked around in me for 2.5 hours taking pictures. They couldn’t get to my tube or ovary – all they could do was drain the 12cm. cyst. After that she put me on visanne to try and slow the growth of the endometriosis.

Why did the surgeons not see it when removing my gall bladder? For the last couple years I’ve been treated like I’m crazy, or weak, or whining and I am none of those things.

Here I am four months later, I’ve had a light period since December 1st – so 49 days and counting) and I just found out the cyst they drained is back and already 8cm. They feel that a full hysterectomy, removing my uterus and ovaries, is the way to go at this point. It seems like it will be high risk because of all the endometriosis dissections that will need to be made.

They won’t be able to do it laparoscopically and will need to do the large incision across my stomach. They’ve said I will need to go on hormones because I am only 40 and menopause would likely hit hard because I am not close to menopause yet.

I’ve found so many horror stories online of bad post-op recovery and returning endometriosis due to hormones that I’m left crying every day not knowing what to do. My biggest fear is not waking up and leaving my kids without a mom. My second fear is having yet another unsuccessful surgery. My third fear is bring horribly sick post op again. My fourth concern is asking for help during recovery as my husband works long hours and my kids are eight and eleven and have busy lives that I need to keep going while I’m out. I’m also concerned about being off work this long.

Can anyone share words of wisdom or encouragement as I need to come to terms with things and make a decision. I need to make a list of questions to ask my surgeon. I need to stop weeping uncontrollably. Thank you for this website!

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15 comments

  1. Frances,

    This post was a long time ago but I can’t even tell you how it made me feel. I’ve never heard of this procedure before. I’m 22 and have severe endometriosis. I’ve been on many different brands of birth control to try to fix things hormonally over the past few years and it’s only gotten worse. I have been told by 5 different doctors that a hysterectomy is my only option and my most recent doctor is refusing to treat me any longer because a hysterectomy is all that she can do personally, too, and since I don’t want that, she won’t approve any other treatment method. I haven’t even thought whether I want kids or anything and the idea of just taking out all of my organs and being completely infertile and dependant on HRT at my age is terrifying.

    I know I shouldn’t get my hopes up and I don’t even know if I would be eligible for the surgery you had. I can’t seem find very much on Google about a “total radical excision”. Is there anything else you can say about it? Is there anywhere I could read about it or reasearch more? The only things I could find on it mentioned that it needs a whole team of surgeons because of all the different organs involved. It sounds like a really big deal and like it could only be performed by an extremely skilled specialist. How long did the surgery take? What was your recovery like? Is there a lot of danger to the other organs like ending up with incontinence or anything else like that?

  2. Tina,

    I was in your position regarding endo. The private gynae consultant I saw (who had advertised as treating endo) came to see me after an investigatory laparoscopy and told me I was “in a total mess”. she did not explain exactly what that meant but I found out later I had the same degree of endo that you describe. She told me that my only hope was a full hysterectomy. I went through enormous turmoil over this as I did not feel ready to go into enforced menopause and could not see the point in losing my ovaries under the rationale that it would stop the endo from growing (I was already riddled so that needed sorting n any case surely) and to then take hrt to replace the hormones. Somehow to me that did not seem a satisfactory solution. If it had been the answer to my endo then I would not have hesitated.

    I am pleased to say, this advice about a hysterectomy being my only hope turned out not to be accurate. What she meant was, a hysterectomy was all she personally could do!

    I came across the website of a top endo consultant surgeon. I got a referral to see him and, 2 years ago now, I had what is called “total radical excision surgery”. This is where the whole top layer of your peritonium is excised. This separated all of my internal organs that had become stuck and, when healed, left me with a new peritoneum. He also sorted my ovaries out (many surgeons remove them) and did a precedure called “temporary ovarian suspension” which saved my healing ovaries and healing perotoneum from becoming stuck up again.

    The problem with endo is that it can be seen and unseen. Common treatments offered by general gynaes are drug therapy (which is only temporary and not a long term solution), laser treatment (which only burns off the surface, leaves any endo that is more deep rooted, and caused scar tissue), and excision (where endo is cut away). Excision is best as it takes the deeper endo out and not just from the surface.

    Patch excision is good where you do only have patches. Where endo is extensive, as I had and as it sounds like yours is, the best operation and treatment currently available (although few surgeons can do it) is “Total radical excision” . This is lengthy surgery but is all done keyhole so recovery is relatively quick.

    I had this surgery just over 2 years ago now and I can honestly say it was the best thing I could have done for myself with endo. I have had no further problems or pain with endo since.

    My surgeon said that a hysterectomy will only help endo pain if you have adenomyosis (where the endo is deeper in the uterine muscle). More commonly it is in the peritoneum and sticks to everything on the surface. Even if you have a hysterectomy for adenomyosis, if your endo is widespread and that is not excised at the same time, you would still have endo unfotrunately. A hysterectomy on it’s own will not sort out widespread endo. Endo is not really just a gynae problem. It is of the abdominal cavity in general – not just of the uterus. I had it on the surface of my bowel, bladder, ligaments, diaphragm, ovaries, uterus and within the pouch of douglas (space between the back passage and vagina). It was all excised.

    I thought it would be helpful for you to know this information and to share my story with you. Hysterectomy is not the only option if you see a specialist endo consultant surgeon.

    I am not sure I am allowed to give the name of this surgeon on here but if you look up endo surgeon his website should come up. He is based in Elland, South Yorkshire and consults in London also. Unfortunately he recently ceased working under the NHS and so is only private. There are ‘centres of excellence’ for endo. I would recommend you find one of these and ask to be referred before deciding on your path.

    All very best wishes

  3. Hi Shanon. Depression itself isn’t common, but feelings of sadness and being low are, this is usually because of the surgery itself causing the post surgical blues and a dip in hormones. They normally right themselves of their own accord as you go through the healing process 🙂

  4. I am 54 and due to have a TAH on 4/3/13 and although I am experiencing all the usual fears over surgery etc, I am more apprehensive over becoming depressed. Is this a common complaint whilst recovering?

  5. Tina I am so sorry to read about the tough time you have had. I do understand your worry, my surgery carried extra risks because I had previously had two abdominal surgeries, one emergency, and at the appointment before the op my consultant told me she was worried about bowel damage. She also told me that on the morning of the op and said “but we have no choice”! I was so worried and like yourself dreadfully afraid I would not survive the op, but I was soon coming round in recovery with no more problems than anyone else who has a TAH.

    It is a big op and it is natural to feel frightened. I feel it is a time to think of yourself rather than others. It really is a time to be selfish! You will need a lot of support from your husband/family/friends to keep the household going, but your children are old enough to understand that thinks may be different for a few weeks, and to help you. Although it may be several months before you begin to feel energetic (I had my TAH 2 1/2 months ago and am just beginning to feel more lively), you probably won’t feel too bad or be unable to do anything for more than a few weeks.

    Have a good look at the monthly forum posts on this site – you will see how the ladies cope and progress. The support on here from others is fantastic.

    Let us know how you are getting on.

    Sara

  6. Hi there – don’t be fearful my cyber friend – I am sure things WILL be better after this surgery ! I will share my story with you I am a bit older than you 48 . Two years ago I had a total hysterectomy ( Bikini line cut ) all my life I had heavy periods lasting for more then 7 days in the end appearing every 2 weeks ( thought I was going through premenopause ) did blood test and revealed that ovaries were producing just levels of estrogens 🙂 did ultra sound stomach and vaginal and discovered large fibroids ( like being 5 month pregnant ) and a cyst on one ovary . After my TAH I was told I had ovarian cancer , when they went in my Gyn ( great doctor) thought there was something wrong with one ovary – send it during the surgery to get tested / sure enough cancer — he scraped the abdomen lining took some cyst that was leaning against colon and basically made sure all was clean 🙂
    Five weeks after surgery I started chemo for 18 weeks ( yup hair loss and all ) BUT I am now almost 2 years cancer free I have scans every 4 month – so far so good !
    I can not take hormones ( due to the cancer ) so my hot flashes are BAD — BUT BUT BUT I am fine ….. Great otherwise – the surgery was not so bad – the recovery after the TAH was nothing like what some women described it – not so bad at ALL !!!!! Had the surgery May 17 and the chemo 5 weeks later and a trip to NYC for 3 days from Washington DC with my German family ( brother , sister in law and two nieces ) early August 🙂 Again what I am trying to say is – hopefully it will be all good – this surgery will go well for you and recovery will be easy !!! It is possible !!!!
    I wish you all the best – keep in good spirits – sounds crazy but it will help you through it !!! Hugs Andrea

  7. I wish I could offer you more words of encouragement, I had a full Hysterectomy in 2011 for a 4cm cyst and Endo, like you, the endo was stuck to my bowels. My Gyno reccommended not to go on HRT due to it causing the Endo to grow back. The hot flushes are now bearable, funnily enough they are worse in winter than Summer. I take nothing for mine, but it;s been almost 2 years since the op and I have noticed I have more aches and pains and also now have Osteoperosis. I now have to wear pads every day for incontinence. I will be perfectly honest with you, my periods, although extremely painful and heavy, was nothing to what I go through now.

  8. Hi Tina I can sympathise with you 100% I too had every emotion you are feeling but I can say I’ve had it done, I am still here & I feel like a different woman!

    I too had recurring cysts & was totally riddled with Endo. I did manage to have 2 children but spent years trying! My surgery for a total abdominal hysterectomy was in October 2012 so its still early days but I feel great & recovered well. I am only 37 so have been put on HRT & so far so good.

    You will manage through your recovery time your children are at a good age to be helpful at home mine are 4 & 2 so I needed someone here for the first 2 weeks but after that I managed with friends & family doing school runs & cooking while I just sat & watched them. It is very tiring so you DO need to rest as much as possible but it really is a short time frame for what will make you feel much better in the long run. People do understand so don’t feel bad about being off work or asking for help.

    Write down all your fears & how previous surgery has affected you in the past & take it along when you see the surgeon they can do things differently & give you meds to help sickness.

    I can honestly say I never knew just how poorly I felt until now, I feel like a different person & everyday just feels better & better. I hope that helps a bit the way you feel emotionally is normal. Good luck x

  9. That sounds so familiar apart from the fact that my endometriosis was found in my early 20s so I had various treatments to reduce it and did eventually manage to have a child. However when we tried for a 2nd one nothing happened, so after a 3rd laparoscopy it was decided they couldn’t do anything more for me, and like you I went around 11 days from the end of one heavy period to the start of the next, so I had my uterus, ovaries and cervix removed. Not sure why they removed my cervix as the letter from surgeon afterwards said it was completely normal. But as with yourself it was all attached to my bladder and bowel, and I was told even if I had got pregant again, I could never have carried a baby to full term. I was 38 when I had my hysterectomy and tried various HRT, couldn’t take tablets as they made my migraines much worse, but patches seemed to work, apart from they won’t stay on so not really benefitting from them. All the advice I can give is for the first couple of years after wards I felt pretty hellish, but now 4 years on, whilst the hysterectomy wasn’t a cure all, now I can go on holiday without having to worry about a period keeping me housebound for 3-4 days, and I’m not constantly in pain, so while things aren’t perfect now, in most ways I feel so much better than I did. If you do get it done, ask them to leave your cervix if at all possible. I hope this has been of some help, and you feel better eventually x

  10. Hi Tina, Im sorry your feeling so scared and have been through so much. I had to have a Hysterectomy ( cut across my stomach ) nearly 3 years ago due to two cysts on my ovaries and I also was very scared. After my surgery I was told they had found a LOT of endo and had to leave my cervix in because it was too badly adhered to my bowel. I was almost 39 when I had the operation, I actually spent my 39th birthday in hospital :-((( , the doctor put me on HRT as I was also young to go through the menopause but it affected my liver and gave me migraines so I had to come off it a year later. Two years into my forced menopause I can honestly say I have only had occasional hot flushes, so it doesn’t hit everyone hard! the operation itself wasn’t as bad as i thought it would be nor was the recovery. I wont lie, it was a long slow process and you need to take it careful for a very long time afterwards. My stomach is still a little numb and tender at times and i still find myself protecting it but I think that is natural. If you want to ask me anything I’m happy to help if I can. I think mine is a positive outcome and I know how important it is to have support from someone who knows a little bit about what your going through. my personal email is bertybeatle@hotmail.co.uk

  11. Hi ladies, just wanted to say i was very scared about having a hysterectomy i had mine done 3 months ago after years of suffering with heavy periods, the last year i was so bad i couldn’t get out of bed for days due to the heavy bleeding and dreadful pain, after my op i was never in any pain it was a bit uncomfortable walking for a few days and obviously had to rest for a few weeks but i feel so good now and it was definitely the best thing for me,

  12. Hi Tina,

    I am 45 and 4 weeks ago had a total abdominal hysterectomy and bilateral salpingo oopherectomy due to endometriosis and cysts.

    Like you I had day surgery to remove my ovaries and the endometriosis but it was unsuccessful as the endometriosis was too far advanced. I was told when I came round from the anaesthetic that the only solution was a hysterectomy. That night I was violently sick and burning up I assume it was from the anaesthetic.

    On the day of the surgery (8/1/13) I was seen by the gynaecologist who told me that she was more scared than I was because of the fear of injury to the bowels and bladder, she did have a bowel surgeon in theatre with her to help her out. It was also discovered from the pre op assessment that I was anaemia and the gynaecologist said she expected me to lose more blood than is normal with the op. Then I was seen by the anaesthetist, I told him that I’d been sick after my last surgery. He had no concerns and told me that he’d give me an anti sickness injection to combat this.

    I woke up after surgery with a saline drip and catheter in. I had to have a blood transfusion due to the blood loss during surgery. I was also given morphine for the pain that I controlled myself whenever I felt any discomfort. I was checked regularly by nurses throughout the night doing their obs (blood pressure, temperature etc).
    The following day I was taken off the drip and had the catheter removed, and I was encouraged to get up onto my feet to sit in the chair in my room. Everytime I stood up after that it got a bit easier, I didn’t find it painful just very exhausting and a little uncomfortable. Now 4 weeks on I am not getting so tired and am looking forward to swimming, cycling and walking my dogs again soon.

    As for help with your children maybe if you expressed your concerns you may get home help while you’re recovering.
    I wish you all the best and would say go for it.

  13. Hi Tina, I had a very similar experience to yours as I too went in for day surgery to remove my ovaries due to cysts and endometriosis. Again like you they couldn’t do it because the endometriosis was everywhere and I was advised that a total abdominal hysterectomy was required. Again like you I was sick that night after the anaesthetic. I went to see my gynaecologist and was booked in for the op on 8th January this year.I was petrified of having the anaesthetic and told the anaesthetist before surgery he was brilliant and reassured me, I also told him I had been sick after the anaesthetic and he said they would give me an anti sickness drug to combat this.
    After the operation I woke up on a drip and had to have a blood transfusion due to anaemia and also had a catheter in, I was also given patient controlled morphine for the pain. It is now 4 weeks since I’ve had the operation and I can honestly say that although I’ve had my ups and downs emotionally every day it’s getting easier. I am looking forward to getting back to cycling and swimming and that should be in a couple of weeks. So don’t listen to the horror stories everybody likes to share them but there are far more women out there who haven’t had major problems after the surgery. I am 45 and have to take hrt until I’m 50. Any concerns your doctor, anaesthetists and nurses will put your mind at rest. I am definitely glad I had it done.

  14. Hi Tina, so sorry to hear your story. I am due to have a TAH and will be having the full cut across bikini line. I can understand your fears as i have some myself, but a few weeks of discomfort will be worth it when tou offset that against the new life you will have later. As for the sickness if you explain things at your pre-op i am sure they will be able to give you something. Do you not have any family that can help you with you post-op care ?
    I am sure if you talk to work they will be understanding, what work do you do ?
    Try and stay positive. xxxx

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