Hysterectomy before kids

[cryst4l]

Hi Ladies, just a question really:-

Did any sufferers of severe endometriosis (stage 4) get told that their only resort was a hysterectomy? (After having laparoscopies etc) and Did you have you any children via ivf or naturally before you had the hysterectomy? Just curious as when I see posts of ladies saying they are waiting for their hysterectomy, I often wonder if this is after having kids or that they have no option but to go down this route before kids.

I have severe endo, organs stuck, recto vaginal nodules, and mild adnomyosis but the inside of my uterus is fine. I am having my first ivf frozen embryo transfer in early May. I was told to go straight to ivf after my laparoscopy last year, have a family and then return for a joint full hysterectomy and colon surgery. At this point, I am giving it my best shot and then face the other challeges if need be.

Thank you x

[SarahG87]

I was told wen i was 26 that it was my last option. I got a second opinion and was told that was not the case and was put on prostap 3.75mg injections once a month for 6 months. This put me into the menopause but also came with a lot of sde effects i suffered from migraines caused from bleeding behind my eye (side effect). I also had the coil put in and between the two it has helped. Im now 31 and am looking into removing the coil to see if i can get pregnant but only time will tell. Hope this helps you

[Ouchiegrouchie]

Did he/she say Endo or Adenomyosis (endo of the uterine muscle)?

Because there are women out there who are endo sufferers still despite full hysterectomy. In my observation the ones who have must take a much more alternative health care approach. Such as endo diet, acupuncture and Chinese herbs, yoga, low stress environment, ridding of xenostrogens (chemicals that imitate estrogen, like pesticides to laundry detergent). Also, generally, endo surgery by excision (specialist who skillfully cutting it away) not ablation (burning it away).

However, if it is Adenomyosis hysterectomy is almost always the cure. Here is more about that, from my viewpoint. I had it, it has been coined endo of the uterus. It is hotly debated over the years if endo and adeno are connected. My opinion is yes they are.

Regardless, It is awfully painful (other gals who had given birth said it was like labor pains many days a month). It is like extremely dispursed endo tissue within the muscle so that they cannot really just go in and take portions out and preserve the uterus. Apparently maybe if caught very very early, but that rarely happens because dx is so difficult and late in the game as it usually assumed they have endo, or do and the symptoms are similiar so it must just be endo alone, and to take things that weaken it while Adeno progresses with each period...blood getting stuck in the muscle unable to shed. This according to Uni studies I have read over the years and my experience that the more I bled (not necessarily even heavy bleeding) the next period was generally more painful than the last.

My doc diagnosed mine in my exam saying it was a bit enlarged and boggy. Both terms specific to Adeno. A hysteroscopy confirmed it and 100% diagnosis upon removal and pathology during partial hysterectomy.

I was late 20's, no children. I won't sugar coat it. It has been and still can be very difficult to feel, realize and accept, almost ten years later. However, sometimes that is just the cards we are dealt. It is up to us to decide how to play out our hand.

Surrogate, adoption, these are options. Or looking at it as a blessing to just be yourself, no children to raise or worry about. If kids are what you want nthen get crackin'! If you have infertility issues I highly suggest you go the eastern medicine route, see an Acupuncturist, get on herbs, I know people who got pregnant finally this route.

Hugs to you,

OuchieGrouchie

[Saraht100]

Hi

I was diagnosed with stage 4 endo last year. Waited till March (this year) for my op which was pretty successful - they separated my bowel from my uterus and right ovary and Fallopian tubes. Also my bladder and utera’s were separated. Left side is all still stuck and they have recommended I go on a course of zoladex until I can have another op to sort out the test.

I didn’t get to ask about chances of having children after the op (I am 36 & no children but desperate for them) but they did say my fallopian tubes looked quite damaged.

I m waiting for my follow up appointment in a few weeks to ask if having children even looks possible from what they have seen inside. Or maybe IVF.

At my previous consultations my specialist always seems positive about having children & I hope there are ways to make it happen.

I have days where I am still hopeful it will happen but the longer all this takes the older I get and the worse the endo is likely to get.

I would like to think hysterectomy is a last last resort!!

[ccsmith]

I would get a second opinion & check your with a certified endo specialist unit. My consultant wants to do everything to avoid a hysterectomy & im 40! He says it’s very last resort and only if I’m not coping.

To give you hope I’m stage 4 and when I was early 30 and desperate for a baby my gp referred me to a fertility specialist rather than gynae. The specialist refused to believe my issues were my endo and after 2 years of fertility tests and medication I was referred for IVF. The consultant was fab and spotted the chocolate cyst my Specialist had missed. She advised I needed to see an endo specialist but ironically I fell pregnant while I was waiting.

Don’t give up hope I’ve had loads of surgery and treatment after having my miracle little girl who’s now 7! I’ve had a pregnancy since but sadly my endo had caused adhesions and it ended as a ruptured ectopic. I’m now on Zoladex as they say I’m too young for a hysterectomy!

Get a 2nd opinion but don’t give up on a baby as you never know!!

Good luck you

[Leannef]

Hi Crystal, I was diagnosed stage 4 endro before having children. They advised I would need a hysterectomy. I had my first child naturally aged 27. Followed by a large chocolate cyst on my left ovary. The gynaecologist told me I was very lucky to full pregnant let alone carry the baby full term. I was then told I would never have any more children and they wanted me to start injections to put me into a false menopause. I spoke with my gp she advise I declining the offer and finish my family first. I went on to have two more children that I don’t think would have been here if I had not took my gp advise. I have had operations for endometriosis since then I am now due my forth as my ovary and bowel are all stuck together. Hysterectomy are not a cure just a treatment. I have had every treatment over the years just not the injections. I now know I don’t have the choices no more and have to go with the doctors as this disease is taking over my body. Do what is right for you.

[Hidden]

I had a hysterectomy and oophorectomy last year at 39. It really depends on your circumstances and your disease and it isn't something they can insist that you do. I already had two children and didn't want more but by that stage the disease had damaged my fallopian tubes so I would have needed surgery and fertility treatment to get pregnant anyway, and I suspect my chances at 39 with the disease that I had would not have been very good. My consultant did say that if I had wanted more children, they would have carried out a more conservative surgery with the aim of helping me get pregnant and delayed the hysterectomy. They would not however have been able to excise all my endometriosis at that point.

I had very extensive disease - I had adenomyosis (hence the hysterectomy), a large rectovaginal lesion, it was on my bladder and round my left ureter, on the uterosacral ligament, then on the right side of my uterus which was stuck into my right hip, ovaries with endometriomas stuck together on the back of my uterus, plus hydrosalpinx in the right tube. I'd had a mirena, decapeptyl, norethisterone, cerazette and prostap and nothing had stopped the bleeding or the pain, I was taking a cocktail of tramadol, codeine, mefenamic acid, diclofenac suppositories and then regularly going to A&E for help. It wasn't a decision I made easily. I made sure I was at a bsge accredited centre with the best specialist I could access and I'd asked for a second opinion.

[fishee1204]

Hi Crys4l

In my experience all my doctors have asked if preserving my fertility is part of my plan prior to advising on my next surgery.

I know everybody's stories are so very different, which I think is the horrifying thing about this evil disease, however I was re-referred January 17 with the hope of having a baby. The doctors have been great and after many tests, treatments and surgery, I'm going in in 3 weeks for a bowel resection and another excision with tube patency tests to see how viable it would be for me to conceive naturally. I have found out that I have adenomyosis as well as endo and I do try not to have a period as they are debilitating, however I have to just keep staying positive for the chance that I might get the chance to ttc one day...

I wish you luck and try to have an in depth discussion with your doctor to do all that they can with trying to preserve fertility first. I found the endo diet helpful