Needing some help. Terrified at the prospect of fibroid surgery (full hysterectomy)
Posted , 7 users are following.
Hi Ladies
I am feeling really overwhelmed just now and hoped posting here will help. I've got such a long, convoluted story, I will try keep it brief.
I've been unwell for 4.5 years- it's mostly been fatigue, which is very debilitating. I initially had severe abdominal pain and bloating but now it's not as bad- I swell up huge before my period and have lots of pains but it's bearable. I have severe lower back pain, it's constant and really difficult to manage, it hurts to sit, stand or lie for longer than 20 minutes, so sleep is difficult. My periods are light and not too much trouble at all. They became shorter and lighter at the same time this all started.
I've been referred everywhere over this time (gastro, gynae twice, orthopaedics). I had an ultrasound nearly 3 years ago that found 2 fibroids growing out of my uterus. I was told by gynae that they were asymptomatic. Enndometriosis was queried and I had a lap 2.5 years ago- nothing was found- just the fibroids- one of which had grown since the ultrasound- from 5cm to 7cm in my pouch of douglas. I had been put on a contraceptive pill in the run up to the lap which helped my symtoms so I was discharged, being told that I had had a hormone imbalance that the pill had resolved. I stopped the pill and the abdominal symtoms didn't return but my fatigue did gradually and I also started to gradually have lower back and hip pain.
I eventually saw orthopaedics earlier this year and had an MRI- following which I was told I had severe endometriosis and was referred back to gynae. The endo specialist service were consulted and they requested another MRI, I was told I had a cyst growing off my ovary and they sent me for a CT scan. I was then told it wasn't a cyst, it was the fibroid (the same one from before- pedunculated) that was now 13 cm in size, which they described as a 'bizarre, complex mass'. They said half of it was a fibroid but a large part was blood filled and there was some that they were unsure of. The endo service said this did not appear to be endo so referred me back to general gynae who were very vague with me and didn't offer me much of an explanation, they told me to go on zoladex for 6 months to shrink it but there was no plan for after the 6 months. They said surgery was not an option. I was reluctant to try zoladex, so I requested more info by meeting with the endo consultant- they said no initially but requested my medical notes and saw how much they hadn't told me and so I wrote a big letter detailing it all and I've got an appointment with the endo specialist consultant in a few weeks. He's wrote to me to say that they are unsure what is going on but that he thinks exploratory surgery and biopsy will be at least required and that a surgical approach will likely result in me losing one or both ovaries and possibly also hysterecctomy. He said in the letter he is concerned about the pathology of the mass and wants a biopsy and CA125 taken (I'm getting that on Thurs) so there's obviously a bit of concern about cancer.
I'm 40 and don't have children. I am unsure if I want kids. I've been so ill, for such a long time, I just don't know what I want. My priority now is to have a meaningful life- at the moment I don't have this. But I am worried that if I got a hysterectomy and then felt better, I will long for a child and regret this. But it seems that a hysterectomy is likely going to give me the best chance of recovery. It just feels so drastic to have a part of my body removed- especially what I feel is something very 'female'.
I am wondering if there are other options that I don't know about. I've thought for a while that I had severe endo so was doing a lot of natural approaches for that (gluten, sugar, soy, alcohol, caffeine free diet, bio identical progesterone cream, DIM, serrapaptase) but this has not benefited me at all, if anything I am now worse.
I recently started CBD oil which does seem to be improving my sleep a little.
I am very reluctant to take synthetic hormones or use painkillers regularly.
I would love to hear from anyone who has had any similar experiences- of fibroids and of this type of surgery.
0 likes, 21 replies
BellaOne bettybetter
Posted
Hello Betty Better,
So sorry to hear of your situation. This whole issue with fibroids is so different for each woman that it can be very difficult to give advice. But what I have found with this site is a tremendous amount of support and encouragement. Some experiences are similar in some instances, but for the most part women have different experiences.
I battle mine for 10 years and couldn't take it anymore. While all of the Ob/Gyn I saw pushed for hysterectomy, I refused and decided to take the UFE (Uterine Fibroid Embolization) route. That was a year ago. Like you I wanted to get my life back. I am in my forties with no children either, but more than that, I didn't want a hysterectomy because I wanted to keep all of my lady parts if I could.
A side effect of the UFE was premenopause which is where I find myself, but overall I am fine and much better off than I was these past 10 years. I have become more active and getting back to how my life was before fibroids took over.
So, I can say to you to look into UFE to see if you can get that instead of the hysterectomy. I wish you all the best. Hang in there and keep your faith. It will get better.
bettybetter BellaOne
Posted
Thank you so much for your reply. It's really helpful. I've been reading about UFE and it does sound like a much more attractive option. I feel exactly the same about the prospect of losing my uterus/ovaries. It's a part of my body and regardless of whether I want children, I don't want to lose them, especially if there is a viable alternative that will still help.
I wondered if you'd mind answering a few questions about it?
Was your fibroid large and causing a lot of issues?
Did you get UFE on the NHS? and if so was it a bit of a battle?
This will definitely be one of the things I will be asking the consultant about when we meet in a few weeks.
Thank you
BellaOne bettybetter
Posted
Hi Betty Better,
Yes, I had about 7 fibroid of which two were pretty large. One was so large that it was growing upwards in my stomach and pushed my uterus way back. The other just caused me to bleed so much that at one point I needed a blood transfusion. I was under my ob/gyn care who used watchful waiting after I flat out refused to entertain having a hysterectomy. I was doing fine (Bedsides the heavy bleeding - took tranexamic acid to control that) still able to work out and be active.
Then in 2016 I noticed that then fibroids had started to grow as my stomach became more bloated and huge. I couldn't wear any of my clothes anymore. I knew I had to do something. With hysterectomy out for me I did some research and discovered UFE as a viable option. So in Oct. 2017 I under went the procedure. The initial recovery was tough, but after a while it got better. Over the course of the following months I expelled three of the fibroids. This was not pleasant at all because the smelled really bad. Lucky for me I was home when they happened.
Once that phase past, I stopped having cramps and things started to settle down for me.
Not sure what NHS is, but I am in America and that maybe for the UK.
Look into the UFE option. Discuss with your doctor. I will keep you in my prayers. Have faith and keep a positive outlook. No that you aren't alone and that many women have had this too. You too will heal and get your life back.....
sakura26 BellaOne
Posted
So UFE pushed you closer to menopause?
BellaOne sakura26
Posted
Hi, yes it did. I am now in full menopause. The hot flashes are manageable. And I am learning how to live with it. But the weight gain has been the toughest because it doesn't come off easily. I am now finding some gradual success with the intermittent fasting that I have been doing since Feb, 2019. But other than that I am doing very well. I do not miss my period one bit. Lol.
sakura26 BellaOne
Posted
OMG I already am dealing with weight gain in perimenopause. Horrible after taking progesterone because mine was low. I'm trying intermittent fasting too but so far weight barely coming off. Let me know if you find something better. I know part of my stomach bulge could be fibroid but I think honestly it's mostly hormonal fat and I've gained weight other places. Gone up 2 sizes! I've always eaten healthy/paleo but now am really cutting calories and trying strict keto.
BellaOne sakura26
Posted
Yes, that is the worst side effect. I take an over the counter herbal hormone pill. Heard the HRT is not good as it could lead to cancer. I am seeing some progress with the IF and it's giving me hope. Plus I try to get in aerobic exercise in like walking, playing tennis or running, which is said to help. Also weight lifting.
For my IF I do 16:8 (16 hours fasting and then 8 hours feeding) My feeding time is between 12-8 pm. I also got the Dr. Ian book Clean & Lean to support my IF. Check it out.
sakura26 BellaOne
Posted
I tried 12 to 8 fasting which is normally how I eat anyway and no difference. So I'm now trying 500 calorie a day fasts 2 t o 3 times a week. Thanks for the book idea! I also was debating the book The Hormone Fix, which follows a keto green diet but some people complain the author expects you to buy her pricey supplements. Good luck to us both.
emma89480 bettybetter
Posted
fibroids are such a horrible condition she they become symptomatic. I was diagnosed 5 years ago when I suddenly couldn't urinate and needed emergency catheterisation at the hospital. An ultrasound showed a fibroid 13cm by about 10 had stretched my urine pipe flat against it not allowing any urine to pass through. I was 27 with no children and the uk national health service only able to offer surgery (hystorecromy) I paid for a private gynecologist, went on 3 monthly hormone injections to shrink the fibroid to an operable size (which caused full extreme menopausal symptoms) and 8 months from first diagnosis I went to see if I could have ultrasound guided MRI. unfortunately my womb was tilted towards my spine and I wasn't eligible as my intestines were in the way so I had uterine artery embolisation. a year later I had a check up scan and everything was shrinking as planned. fast forward to April 2017 and I had signs things were not alright. muscle aches, increase period pains and bleeding, heavy legs, foggy brain and bloating. I had an internal ultrasound and it showed up 5 fibroids. I've posted pictures previously of them. Sept 2017 I had open myomectomy and it's been just over a year now and yet again I'm getting signs I'm not ok again. If I had the choice and wasn't pressured by doctors to keep my womb for hormone reasons I would have had a hysterectomy given that this keeps coming back for me. I'm 33 now and can't safely carry a child to term so next time I have to have as procedure I'm going for the hysterectomy. as for the surgery, it's likely going to be open myomectomy if the fibroids are large. you will manage as women are stronger than we get credit for. I don't know if it's the same for everyone but the post op pain wasn't unbearable but passing bowel movements was the worst part for me. I hope you don't have anything synister going on and your biopsy is clear. I hope you get the best treatment for your situation and I really hope you see improvements in your quality of life soon. keep us posted on how you get on and sorry for rambling but I'm some of my story helps you or anyone else reading this xx
molly72020 bettybetter
Posted
hi there, like you i was told i would need a hysterectomy which i found absolutely devastating to deal with. i asked about myomectomy & they either didnt offer it or were not confident about performing the surgery. i thought it was a surgery doctors didnt do in australia as all the info i was looking at online was coming out of the USA. i then sought out UAE which none of the gyno's seemed to be on board with either. by sheer chance my GP referred me to a specialist & he said for me to consider myomectomy over UAE & i was blown away that he could do it. i was 38 at the time with no children & wanted to preserve my fertility. i had huge fibroids up to 10cm x 7cm & had 19 in total removed in all different locations. i am pleased with the outcome, op was done in july. i would shop around fir a dr who has the skills to do it. i was disappointed that the 2 previous dr didnt refer me on but led me to believe it wasnt possible. it would appear many gyno's do not gave the skill or experience to do myomectomy they only know how to do hysterectomy
sakura26 molly72020
Posted
Did you have an open myomectomy? I think doctors push for that because it's easier for them, not for you. Vs. robotic or laproscopic. Also did the fibroids grow back? Or did you grow new ones?
Eeka3 bettybetter
Posted
Hi Betty Better,
I'm curious why they said surgery (laparoscopic or open mymomectomy) wasn't an option? Hysterectomies are a preferred option by doctors because it's the easier route for them but we pay the price of fertility.
In my experience I was told I needed a hysterectomy at age 30 and if I would have listened to that first doctor then I would have had one. I opted to see other doctors and do my own research because we've come to far in medicine to simply go with the traditional method of a hysterectomy. Now I'm scheduled for an open myomectomy to remove 20 plus fibroids, the largest being 13cm.
If you were told you have fibroids, I encourage you to look for a OB that specializes in fibroid removal because any doctor who does not specialize in fibroid removal will not try their best to preserve your uterus because they aren't skilled in it and will tell you that hysterectomy is your only option. I told every doctor I met with "I need you to give me the best chance at life with or without kids, can you do that?" and if they weren't confident in their response then I knew I had to keep looking. Good luck!
XellossMChan Eeka3
Posted
Agreed. I had an open myomectomy and I had at least 23 fibroids. So I'm wondering why that's not been suggested as an option for you. At least this way, you'll still be able to have children.
Jawjee bettybetter
Posted
Hi. I understand your fears. I am on the list for a hysterectomy in July. I have a pedunculated fibroid the size of a rock melon (like 6 month pregnancy i was told). i have known about it, and other smaller ones, for 6 years because i got married and wanted to start a family at 42 and wanted to check everything. i was told that if i had it removed i would have to wait 2 years to heal before pregnancy. fast forward 6 years to now. It has grown and pushed my uterus over to one side. i have an ovary up by my belly button.
i have never had a child. now i was asked recently by all these specialists what the 'end game' is. even if they scraped all of the other large fibroids out of the womb and did a myoectomy on the pedunculated one, they would not use my eggs because they are 'too old' so i would need donor eggs and the success rate is small. Thus I am resigned (with great sadness) to the hysterectomy, for the best outcome. they will leave my ovaries in there but remove uterus, cervix and fallopian tubes. I will be rewarded with no risk of cervical cancer and no more periods - after having them like clockwork for nearly 40 years, it is my only consolation. I have 6 siblings, most with very large families, all having children. My greatest challenge, after all this, is dealing with the grief.
I have never had an operation before, so there are small fears around that, however one of my older sisters recently had a hysterectomy, due to fibroids, and she is very happy...... but the biggest affect for me is the grief. I will most likely seek counselling and do all those sensible things. but for now I just cry when I think of it. Like a broken heart.
bettybetter Jawjee
Posted
I could really hear the sadness in your post. I guess I was lucky in that I was ambivalent about wanting a child but it's heartbreaking that this is something you want. I'm so sorry it's come to this.
I don't want to give you false hope as I don't know your full situation or where you're based but is the surgeon going to attempt to remove things while preserving your uterus? I've had my surgery now, 2 months ago and I agreed with my surgeon that the surgery would be about them assessing the situation, removing the fibroid if they could and up to one ovary & tube but if it seemed like I would need a hysterectomy, it would be another surgery, so that I could prepare myself. The surgery actually went better than anticipated. The surgeons were able to remove the large fibroid, a few of others and some 'seeds' as they called them, without removing anything. The weird mass they'd seen in the scans was actually the pedunculated fibroid that had started to degenerate but then attached itself to my organs and pelvic walls and was absorbing blood and nutrients to survive (like alien!). It was attatched to every organ in my pelvis, including kidney and liver. It's apparently a very rare thing to happen.
They used a technique called in bag morcellation and as is been on decapeptyl for 3 months before the surgery the fibroid had shrunk by 50% making it all a bit easier and manageable via laparotomy.
I just thought it might be worth telling you that it can be done without damaging the uterus. I dint know if I'm fertile,I've not tried but I'm still having periods.
X
sakura26 bettybetter
Posted
Hi, what is decapeptyl? I have a 11ish maybe larger at this point fibroid and my OBGYN is pushing for open but robotic or laproscopic would be best for me with my job and being single. She mentioned I could try to shrink it with Lupron but that it would give me bad side effects and also would make the fibroid soft and harder to remove.
bettybetter sakura26
Posted
Decapeptyl is a type of drug called GnHR antagonist that creates a temporary chemical menopause. I think it's a bit less controversial than lupron, there are a lot of very negative studies about that drug of you look into it as its used a lot more for endometriosis.
You can only take decapeptyl for up to 6 months and it's usually just used to help before surgery. It made my uterus more firm, which meant it was harder to move and they actually punctured it a little bit they said it'll heal fine.
sakura26 bettybetter
Posted
Thanks. What kind of side effects did you get from the decapeptyl? 50% is a lot of shrinkage! If I could take that without a lot of side effects, I could shrink mine prob to 6cm and then get laproscopic or robotic or maybe not need surgery.
bettybetter sakura26
Posted
It puts you into a menopause, so you could get any menopause symptom, for me, I had really intense hot flushes and my sleep and fatigue was worse, I also had less troubling things like dry skin, skin sensitivity and constipation. I was feeling really unwell before I went on it, so it's hard to know what was the fibroid and how much was the menopause. The first few weeks on it, it's common to have some weird symptoms as the drug takes effect. I had a few migraines and felt very fluey. But I've heard other women say they didn't get a lot of symptoms at all. I think it varies. Some people can get joint pain with it too but you can take tibilone alongside it, which is like an hrt and helps to minimise the menopause side effects. I didn't take this though.
After about 6 weeks, I started to feel the fibroid was smaller. My back pain had almost gone before surgery so I knew it had shrunk.
There's another brand of the same drug called zoladex, just if you're asking about it and they mention that, it's the same thing.
You can get a monthly dose or a 3 month dose. They're the same, it only changes the frequency you get it.
My last treatment would've worn off at the start of April and my cycle returned 6 weeks later but I was still having hot flushes until last week. Now that the flushes have stopped, I'm sleeping much better and my fatigue has improved a lot. So it's been about 2 months for things to feel a bit more normal, I think it can take a bit longer for some people and can depend on how long you're on it for.
It's not the most pleasant drug but I am definitely glad I got it as I believe it made my surgery so successful.
Jawjee bettybetter
Posted
Thanks Betty. Unfortunately i believe that time is definitely not on my side. I dont feel that i was given full information 6 years ago either, and that was my most hopeful time. so for others out there....., keep seeking opinions and options.
I dont mind not having a menstruating or menopausing (for that matter) uterus. Especially when it can't do what it's supposed to. But I thank you for your considerate reply.