Advice please! Dangerous myomectomy VS pain+fertility

Women's health
1

Hi ladies! I just really need to talk over some things and get my head around my fibroid-plagued life. Bear with me on the longish post!

So, first off, I'm 35 and have not yet had children. Over the last two years my hubby and I had talked about the possibility, but just hadn't got around to really trying. 

About a year ago, I had very severe pain and prolonged bleeding. I've had stomach troubles for the last 10 years (put down to IBS by lazy GPs who didn't care to investigate). Anyway, I insisted on an ultrasound, and lo and behold, I have two 10cm fibroids, plus a bunch of smaller ones, causing a distorted, retroverted uterus. Hence prolonged bleeding, painful sex and tummy troubles.

Also, one of the big fibroids was prolapsing into my uterine cavity, and was in the process of degenerating, which was causing the terrible cramps.

So, after a flurry of worry about possible malignancy of the degenerating fibroid, for which I was bundled off to a gyno-oncologist for a D&C and biopsy (came back clear) I was then put on Zoladex for 9 months, to try to shrink the fibroids in preparation of a myomectomy.

The Zoladex didn't really have an impact, however the degenerating fibroid finished expelling and no longer prolapsed the womb. So, basically I still have one apple-sized fibroid and a bunch of smaller ones.

Fast forward to this past week. I've been advised by my specialist (who has been conferring with several others on my case) that they think the best chance for me to keep fertility is NOT to go ahead with the planned myomectomy, which could leave large scars on my uterus. Because I'm relatively old, fertility-wise, they're basically like, "just try for a baby first, and see how you go."

The problems is, I'm still in pain all the time. I'm quite slim, but have a protruding stomach which just feels like it's weighing me down. Any exercise causes more pain. Sex is horrible. I can only sleep on my back. ...I used to be a very active person, and now I just feel like a useless slug. ...I DO want to have kids, but I had mentally prepared for it to be in about a year or so, after myomectomy. ......So now what? Do I just start trying right away, even though I'm not quite ready? Or do I wait a year as planned, and have to endure this pain? And THEN, what happens if the remaining fibroids cause miscarriage? I already suffered a miscarriage some years back, which was another reason myomectomy seemed like a good option to me. Should I go back to my specialist and insist on a myo? ....but he is one of the best gyno-surgeons in my country, and my case has been discussed with several other high-calibre specialists, so surely they would know best?

I don't know. I'm so, so very confused.

Sorry for the long post. I'm not really looking for "answers" just maybe another perspective, especially a female one, since my specialists are all males.

Thank you! Rosie

(PS I don't particularly want to discuss diet and natural remedies, which is something I have already investigated and implemented.)

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Hi Rosie, sorry to hear about your fibroid troubles. I had a degenerating one too, so I know what that pain feels like, and the bleeding! I can't give an opinion on the pregnancy/ myomectomy issue, as I was well past that age when I was diagnosed. I have heard of successful pregnancies with fibroids still in place, but don't know what the statistics are for this, and whether it causes a lot of discomfort. I would only say if you are in pain now then the prospect of a another year or so with the added complication of pregnancy is not a welcome one.  I wish you the best of luck, whatever you decide.

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Thanks so much for your reply Christine. I know there's no real "right" answer to my problem, as it's a personal preference when it comes to starting a family. But I feel better to know that someone else can see why I'm feeling confused and upset. My family don't really seem to get it, their approach was "yay, you don't need surgery!" But for me, it was actually a real shock, disappointment and worry, because I was so looking forward to just getting rid of these damned things! ...Thanks for taking the time to reply, I really appreciate it! xoxox Rosie

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Hi Rosie!

I would advice you to check with Another genecologist.I am 35 t i hv been trying for baby so well after a couple of ultrasounds got the same advice as urs to keep on trying. I tried esmya but no significant results. Finally MRI then i was given myomctomey option.I went for surgury, it went well, i feel reliefed, hv no more pain it is 3 months now. I am planning to try for baby after 3 months, as doc said i need to wait 6 months before i try for baby. So check with other geynecologists.

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Thanks for replying, laila, I really appreciate it! I think I will try to get another opinion on it.

I'm glad your myo surgery went well, and hopefully you'll have a smooth journey to motherhood. :D Best of luck, and thanks again for taking the time to reply,

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Hi Rosieposey

Sorry to hear the problems you are having. Fibroids do grow during pregnancy and can cause problems including miscarriage. If you have already had a miscarriage and you are experieincing pain or discomfort its best to have them removed.  If a myomectomy is carried out by an experienced surgeon who is competent in removing multiple fibroids, you should not get that much scaring. I had one in January to remove 32 fibroids and the quality of my life is so much better. I suffered for 10 years with fibroids, heavy bleeding, pain, large stomach, fertility problems, problems exercising.  Many women have successful pregnancies after myomectomy and in the case of IVF most clinics recommend fibroids to be removed before pregnancy as its well known that they can interfere with pregnancy.  If you have the choice of getting a second opinion with another experienced gynacologist do that, if not speak to the ones you have already seen and tell them you prefer to have the myomectomy. I dont know which part of the world you live in, but in London the best gynaecologist for multiple fibroids is Professor Manyonda.  Take time to think about Myomectomy, do research online and if you decide to go for it prepare youself mentally and physically as its considered major surgery and most people, spend 3 to 5 nights in hospital and are given 6 weeks off work to recover, I started feeling better in week 3.

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Thanks for your reply! I'm grateful for your advice, perspective and insight. I had spent the last 9 months preparing mentally for myo, and to have my specialists suddenly change their mind about it was quite a shock and disappointment. It really feels like a backwards step, since I've been on HRT for so long in preparation.

I think I'll be seeking another professional opinion on this! 

Again, thanks for your comment! I really appreciate it.

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Hi Rosie-

     I concur with the above statements as well. Have you tried either Lupron or Esmya yet ? It will stop your periods for 3 months and shrink fibroids, everyone has different results depending on how big and how many. I had great results with the Lupron, shrank by over 50%, BUT they grew back within 18 months. Now taking the Esmya, on first month with 5 large fibroids 5-8 cm. as of 2 months ago, they feel even bigger at the moment. Anyway, NO surgery is simple. I have my own horror story regarding pelvic surgery. Do not want to scare you, as you read above, many turn out fine. Just hope you try something less evasive first. Surgery should be a LAST resort. Ask your Dr.s about the meds I mentioned. Lupron seems more effective, but more side effects. Also look into DIM and Serrapreptase. They both have studies showing results. Goodluck, and hang in there. Peace from The US, Iris

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Hi Iris, thanks very much for your reply. I read your story on another thread, and was absolutely horrified at what you have had to go through. I felt so dreadful for you, and I really hope things get better. 

I have been on HRT treatment for 9 months (Zoladex) which was unsuccessful. My fibroids stayed basically the same size. I haven't tried Esmya, but it wasn't offered to me as an option.

I feel like I'm being pressured to try for a baby asap, since it's an unknown quantity as to whether the broids will make me miscarry. Basically, the docs want me to "give it a try". All concerns about being financially and mentally ready aside, I recently tried having sex with my husband (sorry if this is tmi) and it was devestatingly painful, and left me with terrible cramps for two days afterwards. I just don't think I'm going to be able to "just keep trying". 

My problem is, I feel like I am at the end of my non-invasive options. If I go on HRT any longer (even if I try switching medications) I'm risking getting too old for having kids, if it doesn't work. Then if I still need surgery, I'm looking at another year healing time.

So...idk what's the best thing to do! After reading your awful story, it has certainly made me VERY wary about rushing into surgery. But I just don't see any paths left.

Anyways, thanks again for kindly replying, and I wish you all the best! It really helps to talk through everything with women who have varying perspectives. 

Hugs, Rosie

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So sorry you're dealing with all this, darling!

I too had a degenerating fibroid - 6cm, intramural in the fundus (top) of my uterus. My doctor said there was a small risk of complications during surgery and a risk of scar tissue causing infertility, but the pain was beyond awful, and the fibroid was completely squishing my uterine cavity. There was absolutely no way for me to get pregnant with it there.

I went ahead with the open myomectomy, and I'm beyond glad I did! I was terrified of having such invasive surgery, but it's been worth it. I felt better upon waking up than I had for a very long time.

My surgeon removed the dying fibroid and a few other tiny ones, she checked for cysts (none!), opened my uterus completely to check for endometriosis (none!) and ran a dye test through my tubes (all clear!).

While there's a risk of scar tissue forming and causing infertility, the surgery for me was worth it to be rid of the pain and to give me a better chance of having babies. The hubby and I talked long and hard about options, and we decided that if we can't have our own babies, there's always adoption and surrogacy.

It's a very personal choice, of course, but to be rid of the pain and awful symptoms and to have my life not dictated by pain has been amazing so far. I just got my first post-op period, and holy cow, I had no idea that a period could be easy. I used to be doubled over and unable to function for a week or more every month.

My doctor said in 6 months I could start trying for a baby, and I've got my last post-op appt for a pelvic exam/transvaginal ultrasound to check on things in 2 weeks.

Here anytime for you! Xo

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rosieposey Thank you for sharing your story!

I hope you are able to quiet yourself and find the best solution for you after gathering information. It's a very delicate, time sensitive, life changing decision. I wish you the best of luck!

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Hi Michelle, thanks so much for your comment.

I have been weighing up all the options over the last couple of weeks and I'm becoming more reconciled to the idea of insisting on surgery if needs be. The cruncher for me is going to be a) how painful sex continues to be, and b) what happens when I get my first period after the HRT wears off. If both things are cripplingly awful, I'll go back to the gynae and insist on an op, as I don't want my quality of life to be so badly messed up any more! Like you say, there are always other options for having children, and que sera sera.

Thanks so much for your supportive message and personal experience with surgery.

xox Rosie

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Thanks for your support Kourtney, that is very kind of you! I really appreciate it.

xox Rosie

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More than happy to share, lovely!

Personally, with the pain and discomfort you're having, I can't imagine that the stress your body is under would be optimal for your fertility. Stress is a huge factor in miscarriage and not getting pregnant at all - the body just knows it's not optimal baby time and it doesn't cooperate.

Surgery was absolutely the best choice for me and for future fertility. Before myomectomy, my hormones were a mess. I only ovulated and had periods if I was taking progesterone. I got a period all on my own 25 days post-op (and I had absolutely no idea it was coming - no horrible cramps for days, no constipation, just started bleeding. And it wasn't too heavy, either!), and now I've got pre-ovulation symptoms.

Surgery is a huge decision, but it could absolutely make fertility (and sex!) so much better! Xo