Hysterectomy after birth endometriosis

[Emmalouise23]

Hi, has anybody had any experience with endometriosis leading to hysterectomy after child birth? Many Thanks x

[lauraharley]

Hi

I have had endometriosis since my teens. Its only when i had my son in 2013 that the endo pain became unbearable. To the point whr i couldnt take care of my son. Thankfully i have had the support frm my family and husband. This did lead to me having a hysterecotomy, removal of my ovaries and a temp stoma bag as it was that extensive. It was a very long journey but has changed my life for the better!

[Emmalouise23 in reply to lauraharley]

Hi Laura,

Thank you for you reply. I'm in very much the same situation. Since teens had my daughter in 2013 and got to the stage too where I couldn't look after her it was agony for two years until I had surgery. I'm now pregnant with my second (as it was on my bowel/ovaries/tubes we tried very quickly after surgery 2015) and I'm worried sick about how I'm going to feel about after the birth of this baby.

I have been told that I need a full hysterectomy due to cells in cervix and endo ovary cysts etc. I just wondered how long it was after your little one that you had a hysterectomy? and how oh coped afterwards being so young with a little one? Did you go on HRT?

Many Thanks x

[lauraharley in reply to Emmalouise23]

Hi emma

I had my hysterectomy 1 year after my son was born. If i had a choice, it would have been sooner to be honest. I always feel guilty that i missed out on so much being tucked up in bed in pain. They were reluctant to do it because of my age but i had to insist. Thankfully i have private healthcare with my workplc and was able to have 2 of the best surgeons to perform my surgery

As for hrt, i took that 6 months after the removal of my ovaries. I tried to live without taking it but had terrible night sweats, swollen limbs and a stinking temper!

Are u thinking of going ahead with the surgery?

[Emmalouise23 in reply to lauraharley]

Hi Laura,

That's so so helpful thank you.

Yes definitely. It's a massive decision but we don't want anymore children and I don't think I can have another year like I had after my little girl it was absolutely horrendous.

My mum had a full hysterectomy a few years ago so I was aware about the sweats, swollen limbs and certainly the moods swings! I just haven't spoken to anyone who had had one so young so had no idea what to expect. Ill be 28. I have my appointment with my surgeon to discuss when/options in September so I want to be prepared and have a good idea of what I was going to be going through before I went.

My little one is due in January and I remember the first cycle I had after my daughter I couldn't get out of bed for nearly a week - and it stayed like that until I had my surgery. 3 weeks of the month i was in constant agony, couldn't lift, put my legs down quickly go to the toilet without sobbing. I was on constant antibiotics for urine and pelvic infections cause everything was stuck together, I've never felt pain like it. I don't think I can go through that again especially with 3 children! I have a step son the same age as my daughter. 2 x 4 years olds and by then a new born!

It's also a worry that it will stir anything else on if I don't have it. I'm prone to cancerous cells on my cervix I've had that twice now and ovarian cysts. Both of which are covered in endo. I collapsed once picking my daughter up from nursery when a cyst burst. I'm terrified of these things happening again so I think I'd feel safer getting rid of the possibility. I just don't think there is another option. My previous surgery I felt great for about 6 months after - then everything started again, infections etc. My surgeon is fantastic, I trust him completely and he feels it is the only option so I trust him, it's just a big op!

How did you find you coped post surgery? I have an amazing other half so I'm not too worried about lifting, running around etc it's more the hormones and temper and controlling that (my mum was a mess for about a year).

Have you found it settled fairly quickly after your op? How do you feel now?

Thanks again so much for your help x

[lauraharley]

Hi Emma

Post surgery was ok, very sore and not able to lift for 6 weeks. The level of pain you are experiencing sounds very similar to mine. The problem I had was my endometriosis was cyclic which meant that even though i had a hysterectomy, i was still in terrible pain as i still had my ovaries.

That is when i decided to have my ovaries removed too (nov 2015) . That was really difficult. not only was my hormones all over the plc but it put a huge strain on the physical side of my relationship with my hubby. Around 3 months after that, i has part of my bowel removed and a temp stoma put in place. After the reversal in april this year i finally started HRT which instantly made me feel better.

I am pain free for now but really scared that it will return as there really isnt a cure yet. It is nice talking to you though. nobody can really understand how it can affect you unless you go through it. I had friends telling me i was selfish for having a hysterectomy but they just dont have a clue

How is your pregnancy going??

[Emmalouise23 in reply to lauraharley]

Hi Laura,

Sorry for the late response!

This is so helpful thank you. I would want my ovaries taken from the out set, I'm happy I definitely do not want anymore children and we have a long history in our family of ovarian/cervical cancer that I'm just not wanting to take the risk with either, I wasn't sure how it would affect someone younger through as I ink have parents, older relatives to ask so thank you so much.

The vowel is something that in worried about as that's where most of mine seems to be so thank you for sharing, it's something I can ask about when I go back, how are they going to remove it?

It's lovely to hear that you are so much better though, I can imagine that was a very difficult decision for you so it's great to know you are pain free and happy

The pregnancy is going well thank you, we are having a boy! We found out last week and we are over the moon. I'm just feeling a bit anxious about after birth...but thanks to you I know there is a light at the end of the tunnel 😘 X

[lauraharley in reply to Emmalouise23]

It really depends on how much endo u have on your bowel. Sometimes they can just shave the endo off and you dnt have to have a stoma. My surgeon discribed mine as a blockage, kinda like when people have a heart attack and veins become blocked, your endo can act that way with your bowels. When this happens they actually cut through your bowels, create a stoma and allow the site to heal.

Do u live in london? Theres a really gd endo support grp based in london bridge that really helped me. They usually have a gd turn out on a monthly basis and it nice to meet with other endo sufferers x