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Hysterectomy at 27

(10 Posts)
hollowtree Wed 06-Dec-17 13:06:23

For those who don't wish to read this essay: could you please skip to the end and answer the last few questions if you have had a hysterectomy. Especially if you were pre-menopause.

I would greatly appreciate any advice at all on this... I'm right at the beginning of my decision making process.

I found out a few years ago I have endometriosis. The symptoms are chronic, and with my periods starting at around 12 I had suffered them for over a decade by the time I was diagnosed. My school attendance was less than 75% with one week of every month off due to being in bed with a hot water bottle and painkillers. I couldn't stand and the pain made me sick and tired.

While all my friends bounced through their teens with plenty of energy I felt like I crawled behind them armed with ibuprofen and iron supplements. I would lose so much blood and, until going on the pill at 14 they were completely random, lasting however long they wanted.

By my early 20s I was really starting to notice the difference between me and everyone else. Work was hard. Socialising was hard. Relationships were hard. Sex was (is) painful and I would often go off it a few months into seeing someone, but the worst symptom of all was my insane hormones.

I was so frustrated with myself all of the time, cursing myself for not having the same abilities as my peers to just 'get on' with life. My diagnosis was like having my eyes opened, I was so glad to finally have a medical explanation for my uselessness. I had a laperoscopy to remove the endo and also to laser apart the organs that had become fused together, including freeing my ovaries from my pelvis so that I could later conceive.

The surgery was really successful and only left a bit behind (due to being on my bowel and too risky to laser off). But the cramping and bloating remained, despite having the mirena coil fitted during my surgery.

I had my coil taken out this time last year to have our DD. I am now married to someone amazing who understand my condition and is hugely supportive. But only a few weeks after birth, my symptoms returned. Regular, heavy bleeding, severe cramping, fatigue and nausea all over again.

Pregnancy seems to alleviate many of the symptoms of endo so I had enjoyed 9 months of comfortable enjoyable sex but that is already starting to change back to how it used to be. I can't live my life like this anymore. The pill regulated my periods but they were still horrifically heavy and painful. The coil got rid of them completely but many of the symptoms remanded and some, like my hormone imbalance, we're made infinitely worse. I do not want to use hormone contraception anymore as it seriously affects my mood and am currently using a diaphragm instead.

But after having started a new period today (one week after the last one) I have seriously had it. I am thinking of trying for our second and last baby next year then having a hysterectomy. There is no cure for endometriosis and I see this as the only way. I will then be 28 years old, has anyone else been here?

What was the result? How did you feel? Was it worth it? Do you regret it?

hollowtree Thu 07-Dec-17 09:48:04

Bump

Anyone?

PlayingGrownUp Thu 07-Dec-17 09:51:27

Didn’t want to read and run although I have no experience of endo or a hysterectomy but just wanted to say that if it helps you feel better in yourself and have more energy for your children then I’d be going for it myself in my opninion

Duckstar Thu 07-Dec-17 10:00:31

Just want to sympathise I have endometriosis and it’s horrendous. I’m still bf DC 3 so symptoms ok, but my gyanes advice after last lap was when I decide I’ve finished my family have a hysterectomy - I am 34.

Personally, I would focus on having another baby - sooner then later as endo can effect ability to get pregnant. I conceived no 1 easily, but 2 had to have a lap (and for 3)

Once you’ve done that I would say definitely consider the hysterectomy. Endo is such a horrendous condition - can take over your life.

hollowtree Thu 07-Dec-17 12:13:17

Thank you so much for your replies, playing I definitely need more energy! And duck sometimes I feel so alone with it, thank you for sharing. You are totally right about not leaving it too long for our next baby, DD was easy but there's no guarantee that will happen again!

CMH123 Thu 07-Dec-17 13:06:37

Hi, I had a hysterectomy at 20 for exactly the same reason. I'm on and off here today but happy to PM if I can help. I will reply, just possibly not until later.

hollowtree Thu 07-Dec-17 14:01:43

Thank you CMH I have =)

AttilaTheMeerkat Thu 07-Dec-17 15:11:58

I have endometriosis and I know of women who have continued to have problems with endometriosis post hysterectomy in terms of pain.

It is a great shame that the initial lap did not remove all the endo and although I understand why it was left there it has not helped you at all. Endometriosis can certainly recur post lap and particularly when it is not altogether removed. As your deposits are also on your bowel the hyst will not deal with that at all and that is something you need to consider when asking about a hysterectomy as well.

At the very least you need to see a gynae and preferably one at an endometriosis centre; such places do exist in the UK.

this link may also be helpful;-

www.endometriosis-uk.org/sites/default/files/files/Information/hysterectomy_information_pack.pdf

hollowtree Thu 07-Dec-17 16:43:44

Thanks attila I'll have a look

KingIrving Fri 08-Dec-17 00:27:45

Before considering such a big surgery, watch this video and maybe try it for two months
nutritionfacts.org/video/how-to-treat-endometriosis-with-seaweed/

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